Why live with this disease for so long without getting a more permanent fix?

Hi Dizzy Mel, this is just my own input, but from everyone I have talked to 2 weeks off is the earliest I ever heard anyone say they went back, and this woman said 3 would have been so much better, but that she had a desk job so it worked.
I think 5 days is very optimistic.
I had very little balance left and I reached my first "good" plateau 2 weeks later. I think I had one of the easier recoveries. Good luck and please keep us posted!
Jaemax, so glad it's getting better..........you will be amazed how each week you notice measurable differences. Move as much as possible.
Lisa

 

No, that's nystagmus. My "boy" students love it when I have an attack at school and they get to watch my eyes! They think it is SO COOL! These are 7th graders! I never knew that people could actually see them going left to right rapidly. It freaks the girls out, so when I have an attack at school, I go to my desk at the back of the room, the boys come and watch while help is on the way and the girls stay in the front! They are too funny!

 

Lisa, I trust what you are saying but honestly it was my doc who said 5 days. I have only about 5 - 10% vestibular function left by the results of all of the tests. He seems to also think that I will have the laby as outpatient. As I am still new in my job (7 months) I am hopefull that I wont be having to take off too many days! I will post when I can. thank you!

mel

 

Good luck, Mel. Again, not trying to be pessimistic but my tests showed zero balance left. I can't believe any doctor would do a laby as an outpatient.
But, I'm not a doctor. Not trying to scare you, but it is a major surgery, and your other side does have compensation to do. I did do very well, I thought, but the first 2 weeks were crucial for me. I was very, very tired too. There is no way I would have been able to drive at one week. Maybe you'll be different.
Best of luck, Lisa

 

Ooops! I should qualify. I am having what they call an "inter canal laby". They do in thru the ear canal using a speculum ( I hate that word!). I wonder if that is the difference? The outcome is the same, just the route is different. I wanted to correct that here but will go to another thread if this continues. I didnt mean to snatch this one!

 

I was diagnosed in early 07. I had recently moved to the tri cities with my 4 year old son. Luckily my son was visiting relatives when it happened. I was laying on the couch and all of a sudden i was spinning and getting sick, it lasted three days. Before all this happened I went to Dr. because I was walking around for months feeling like I had a mild case of the stomache flu, I was givin meclazine which did not help. Since that big attack my nausea has become much worse, my eyes don't focus and I could be talking and in mid sentence I would forget what we were talking about. It didn't look like anybody could help me, I was ready to end it all because I felt so bad, after a year I had to move back to Spokane because I couldn't care for myself (shopping and such) and it wasn't fair to my son. In July of 08 I had my vesticular nerve cut, It did take the spins away and all but I still have the nausea and my eyes wont ever get better. I lost a job because I couldn't focus and when I do try to focus it makes the nausea so much worse that I need to lay down, watching trains or something moveing fast does the same, my ear wont shut up, its a very loud humming. I was wondering why I havent seen these symtoms anywhere.

 

Connie - The tinnitus for all of us is very severe. We all share that wonderful symptom of this disease. May I ask is your nausea constant or do you have episodes of feeling well? And may ask how old you were when you had your vns?

 

Well its close to the three week mark post surgery and my wife and I decided to get out of the house, mainly for me since it has been over a week since I left the house. The last time I left it was to go to the hospital to have the staples and sutchers removed. This venture out was for pleasure and shopping for the house. I was apprehensive about the trip because of the last one I experienced lots of nausea and pain for the remainder of the day and the following day. But this trip was more pleasureable in that I did not have near the same effects that I had last time, going around corners and pot holes were the things that got my nausea going. Other than that I was fine until we got to the store and then my head started to hurt. Before I had the VNS I avoided stores because the motors for the coolers and freezers would cause me to have an attack and lose balance. I figure that I am still healing so that particular event didn't occur. I still had to sit down in the front of the store because of my head though. Once we got home things subsided fairly quickly and the rest of the night was nice. Then I woke up at about 5:30 the next morning and my head hurt so bad I had to take some headache meds. I was hoping that things would get better throughout the day but they didn't. I finally gave in and took the Percoset that they gave me in the hospital to deal with the pain. I still have the pain but not nearly as bad as it was earlier in the day.

Other than that, I still have numbness in the left side of my head, jaw and tongue, and I'm still needing to use the walker but I am still pleased with the way things have turned out with this surgery. I start rehab tomorrow and hopefully things will go better than the last time I was there. I will let everyone know how things continue.

 

Thanks, Jaemax, for the update. Glad you're making so much progress, just 3 weeks out. Let us know how the rehab goes!
Mel, that may be why. Hope it goes so well for you!
Lisa

 

Hey there me again, I posted this question to get information on why people did not go for a permanent solution to Meniere's and I got some great responses. Quite a few people were concerned about the possiblilty of going bilateral, so I did a little bit of research and found this information.

http://www.audiologyonline.com/articles/article_detail.asp?article_id=363

Also, I just read a post of a person being misdiagnosed with MD and frankly I am not surprised at all with the level of some doctors and I agree that doctors offices rush people through with out even really talking to them. After a year with a particular doc my wife finally switched to a new one that spent almost an hour with her asking all sorts of questions to get to know her and everything that was bothering her. That is very rare these days. Come to find out she has diabetes. Fun.

Anyway, just a little information for all to crunch on and digest. Perhaps it will give some good advice to fellow suffers.

 

;D When I used to get nystagmus I thought it was pretty cool too & I'm almost 50! I didn't know what it looked like for a long time; I just knew it felt like my eyes had a 'mind of their own' ... trying to come up with adequate descriptive term: jiggling/quivering/zig-zagging! Sorry ... off topic! (And I don't even HAVE Meniere's - I'm a MAVer! :)

 

I never thought to look b/c I always felt so bad, but when it happened at school, one of the boys said, "Look at her eyes!" Next time I have an attack, I'll have to look, but how can you focus to see them jumping around when they ARE jumping around? LOL Sorry, off the topic..............

Jaemax - where's that pic??? I want to see it! Email it to me if you want. I'm also following your recoverey b/c VNS is what my doc has dx for me to have. I'm being skeptical now, probably b/c I haven't had an attack in almost 2 weeks. Of course, I know that doesn't mean anything..... I could have one right now! That numbness is scaring me. I had an ESD and was at the ball park in 3 DAYS! This sounds so much more serious! I don't know what to do! Even though I've had vertigo going on since Oct.

 

jaaemax,
how are you doing this far into your recovery. I agree how important it is to have a Dr who knows you and listens. My GP Dr who I've been going to for 6 years was the first to suspect Menieres. He sent me to an ENT who specializes in Menieres. I found him when my first Dr couldn't or wouldn't figure out what was wrong with me. All he told me was to excersize more and lose 10 #'s, which was ironic since I was and am a faithful workout believer. I searched and found my now GP. He also found I was diabetic 2.
I have a tenative date for surgery Monday 4/13. Part of me is looking forward to it and the other part is scared. Then I have a bad episode and I wish it was tomorrow. Keep us updated.

 

Taz, my recovery continues, I started back at work on Monday and I told my wife that I was going to take it easy and not be there for the full day, but ended up being there until 3, which unfortunately resulted in a wicked headache that kept me awake past 2 in the morning. That headache started before I left work and wasn't really much fun. Tuesday was a bit better at work but I still had a headache when I woke up, which hit off and on all day. Today was also my rehab appt, my therapist says that I am doing good at my rehab, I just get frustrated because I want things to go quickly. I have to trust what he says, he knows what he's talking about. The biggest thing that has me concerned is my headaches, I know that they are to be expected, I'm just concerned that they will not go away. On a good note, the numbness in my face and jaw is now in a fluctuating stage, I will have some feeling sometimes and sometimes I won't. A cool thing about it is that I can eat spicy foods and not have any effect from it, I had some pretty hot Thai food yesterday and my wifes eyes were watering and she kept having to wipe her nose, I didn't taste anything though, I thought that was pretty cool. Overall, I'm excited about the results from having done the VNS and coming up on one month without any vertigo.

Good luck with your surgery Taz, if you want more information feel free to email me. Your quality of life will be much better after the surgery and recovery.

 

So, you are back at work after 4 weeks??? or 5 weeks??? You must be doing well. Did you get my email? I'm still waiting on that picture. I go back to the doctor week after next for re-testing, then see my Neurotologist the week after that, then we'll decide if I'm going to do this. Funny thing is........... I've had attacks since Oct., every week! Start talking about surgery and the attacks have stopped! Weird!!!!!!!! But, I know they could come back in the blinking of an eye!

 

Three weeks actually, and that was probably a little to soon but I'm just experiencing bad headaches, other than that I am doing well. No I have not gotten your email, so no picture yet, sorry. I hope evereything works out for you.

 

Three weeks??? WOW!!! That's great!!! Okay, I re-sent the email to the address that you sent me in the message on the forum. Do you have a SPAM folder? Maybe it went there.

Headaches is one of the things that Dr. Rauch talks about in his videos. I hope you start doing better with those! I'm glad you are not having vertigo though! That is the main thing!!!