Question for those of you who have had surgery (of any kind)

Unfortunately, your experience with a lousy doctor is all too common. It's shocking how many of them are unwilling to think outside the tiny little box they live in.

If you decide to try antivirals, any doctor can script it. Doesn't need to be an ENT.

There are quite a few folks here who have successfully eliminated vertigo through surgery. However, there are also some who have since gone bilateral. And a couple who had surgery unsuccessfully because they actually had MAV. It's at tough choice.

Have you tried JOH or just high dose lysine? That doesn't need a doctor to script it.

 

Sorry to hear the response you got from you doctor. They usually do 'not' do surgery unless all else has failed. In my case--nothing worked and vertigo was a daily horrible thing! So, I had the shunt surgery in 2012 and have not had vertigo since. I lost about 30% hearing in the bad ear prior to surgery and now wear bilateral hearing aids. My right ear is slowly losing hearing and I wear an in it too. REcently developed musical tinnitus--see my posts--that really gets on your nerves. My ent put me back on two Valium daily for 2 weeks to see if that helps. So far--not! I have good days--so far today is much better than yesterday! My head doesn't hurt but the intense pressure comes and goes and along with it nausea on bad days. So, he tells me nothing yet has been developed to help that and you need good hearing aids and perhaps balance therapy (I"ve done that twice ) and it helps. But most days I never know how I'll feel. Not sure what he will recommend after these two weeks. I'm thankful for no vertigo--just hate the ongoing dizzyness/head pressure! I keep on keeping on--and have also tried anti-virals, no luck there. Hope you get some answers and help soon.

 

Is this the only doctor you can see? You can't see a different primary doctor who might be more flexible?

 

i am sure my story is around here somewhere.
The best advice i can give to go to a teaching hospital / university and get a labyrinthectomy surgery ASAP and get on with a normal life.

when one cannot leave the house or is paralyzed by fear from this disease then it is time to take back your life. Do not let menieres control your life.

I live a completely normal life after my Laby surgery. Before that i wanted to die from this bullshit disease.

good luck
Joe/Bulldogs

 

Unfortunately, if there's no money to be made off you, it's easiest to ship you to someone else.

 

Where do you live. Perhaps someone may have a recommendation.

 

I had the Laby and now live my life as I want to . If you are tired of all the hell this disease brings go to a good otoneuro and have the surgery . You will never look back and you will ask yourself why did I wait so long . Read some of my old post if they are still here .

 

I had a Denver Valve shunt installed in 1996. Also during that same surgery a perilymph fistula repair on the oval and round windows was performed all on the left ear. Prior to the surgery I was having vertigo episodes five out of seven days a week while on Valium three times a day. Once during a middle of the night call to my doctor I said to him, "Dr. Whitaker, I am not afraid of your surgery!" I was completely fed up and I'm sure it showed in my voice. Well, in restospect. I should have been afraid, but I was backed into a corner with no way out. I couldn't work, I couldn't be a mother, I couldn't be a wife, and on and on. Vertigo had completely taken over my life. It took years to get over the surgery and until this day I don't really fully understand why. Recently, my neurotologist told me that that surgery was, "intense." His word, not mine. This is not the same doctor who performed the surgery. (Dr. Whitaker was in Southern CA and Dr. Lambert, my new doctor, is at the Medical University of South Carolina.) During the three months leading up to my surgery I had lost 46 lbs over a three-month period and I don't know if that had anything to do with the long recovery or not. Would I do it again? Yes, with great trepidation, given the same circumstances, I would. The surgery almost completely stopped the vertigo from Menieres. I have since had some vertigo episodes here and there, but they were caused by BPPV and physical therapy. Not a big deal all thing considered. As recent as last May I had several episodes from a drug the doctor tried me on for nerve pain (another condition completely). The drug was nortriptyline. At the time I was taking it I decided I'd try to lose 10 lbs, but due to the vertigo ended up losing 25 lbs instead which put my BMI at 20. (Probably a little low) a/k/a thin. It wasn't until later I came to realize that nortriptyline has the side effect of anorexia. So, all in all, yes, the shunt has worked for me. However, I have continued to lose hearing in both ears and am now faced with the decision as to whether to allow my doctor to do two more surgeries for cochlear implants. FYI I am 64 yrs old and started having vertigo when I was 30 years old. I now wear two hearing aids which don't help nearly enough. Hope this info helps you in making your decision in some small way. God's speed.

 

Glad to help. Merry Christmas!

 

Globug. Is the hearing loss in the second attributed to going bilateral? Or is it unrelated hearing loss?

 

I want surgery... I know the hearing will be lost in the affected ear but seriously I believe its a small to pay for a normal life. I am a 35 year old man and before this horrible disease I lived a happy life.. .I played sports , was able to play with my kids and actually had a love life... now that is all gone.. so if I have to sacrifice my already diminished hearing for a normal life I would gladly do it. I'm just going through all the processes that my dr at House Clinic in Los Angeles is putting me through.. My next apt is in Feb.. Lets see what happens. Best of Luck all

 

Perilymph fistula is very rare. To have that on top of Menieres and BPPV is against all odds. If I were in your position, I'd question the diagnosis. Furthermore, successful surgery on PLF is around 50%. The standard procedure is to get bed rest for 2-8 weeks and let it heal on its own. Sounds like a surgery happy doctor, imo.

 

I have spent twenty years thinking about why Dr. Whitaker did all that on my left ear in 1996. I think it is probably because I told him of a time four months prior when I was descending into John Wayne Airport (quick descend) that I lost all my hearing. I had a sinus infection at the time. The case of Menieres was pretty much documented because I'd had all symptoms for many years prior to the airplane incident. In addition my mother and maternal grandmother also had vertigo and my grandmother's father was completely deaf. The BPPV was years after the surgery in 1996. I was a mess post op, that's for sure. Thanks for your post.

 

Reptile2005, From the beginning my doctor thought I had Menieres bilaterally.

 

I pushed the surgery, not my doctor. At the time I felt like I was pushed into a corner by these ears. I was on Valium three times a day and continued to have violent episodes of vertigo five days a week. I had no life. Dr. Whitaker did everything he could to give me my life back and he did. Still the recovery was a hum dinger. Btw, I lost 43 lbs in three months from vomiting and spinning. After the surgery I continued to lose weight because, frankly, I had become anorexic in a way. It was like food turned on me. I am 5'6" and weighed 105 lbs. A nutricianist told me that I made some of her anorexic patients look heavy. She was shocked by my appearance. I was depressed beyond belief and don't know how I found the courage to face each day. I was fearful that I would have a heart attack and not be around to watch my children become adults. That is why I told Dr Whitaker, "I am not afraid of your surgery." Given the same circumstances, I don't know of any other decision I would make today.