Hi, after 20 months of recurrent vertigo episodes, I've been recently "diagnosed" with a suspected perilymph fistula. I have acute spinning attacks that last about 4 to 5 minutes per episode but then feel "off balance" afterwards and a good part of the time between episodes. Sometimes nothing seems to trigger the episode, but they largely occur in the morning as I'm brushing my teeth (clearing throat), during any other sort of exertion/straining, including sex, but also while singing (miked) and laughing hard. Anything that creates pressure in my head and makes my eyes water. The cure for fistula is surgery, which I admit I am chicken about. I do also have fullness, and noises in my ear,but not terribly alarming. Anyone have any thoughts or similar experience??

Hi, after 20 months of recurrent vertigo episodes, I've been recently "diagnosed" with a suspected perilymph fistula. I have acute spinning attacks that last about 4 to 5 minutes per episode but then feel "off balance" afterwards and a good part of the time between episodes. Sometimes nothing seems to trigger the episode, but they largely occur in the morning as I'm brushing my teeth (clearing throat), during any other sort of exertion/straining, including sex, but also while singing (miked) and laughing hard. Anything that creates pressure in my head and makes my eyes water. The cure for fistula is surgery, which I admit I am chicken about. I do also have fullness, and noises in my ear,but not terribly alarming. Anyone have any thoughts or similar experience??
I have heard of that. How was it diagnosied? How can a Doc tell if you have one. Fromw what I read they can heal on there own if you take it easy......

I have heard of that. How was it diagnosied? How can a Doc tell if you have one. Fromw what I read they can heal on there own if you take it easy......

Hi, basically the doc forms a preliminary diagnosis based on symptoms. The exertion/straining is a big cue for fistula. However, I sometimes have vertigo that does not seem to be brought on by exertion/straining. In order to truly diagnose, they must do exploratory surgery; however, even that is not foolproof. They can't always see the tear, but often will go ahead with a patch to fix it as it may be there but not visible at the time of surgery. I've been to my primary care doc, a neurologist and now a neurotologist (who really seems to know his stuff). I've done a lot of reading, and I even formed the assumption of fistula shortly before my appt with him -- I didn't prompt him at all, so when he said that, it was like wow! Now I think I'm doubting myself more than the doc. I do fear going through surgery if it turns out to be for nothing or somehow exacerbates the problem. Then again, nothing ventured, nothing gained? Yes, rest can help some people heal, but that's usually early on, takes about 2 weeks of strict bed rest and typically doesn't work in someone who has had problems as long as I have. My doc is NOT recommending that. Has anyone on these boards been through this surgery or experienced similar symptoms?

Hi, basically the doc forms a preliminary diagnosis based on symptoms. The exertion/straining is a big cue for fistula. However, I sometimes have vertigo that does not seem to be brought on by exertion/straining. In order to truly diagnose, they must do exploratory surgery; however, even that is not foolproof. They can't always see the tear, but often will go ahead with a patch to fix it as it may be there but not visible at the time of surgery. I've been to my primary care doc, a neurologist and now a neurotologist (who really seems to know his stuff). I've done a lot of reading, and I even formed the assumption of fistula shortly before my appt with him -- I didn't prompt him at all, so when he said that, it was like wow! Now I think I'm doubting myself more than the doc. I do fear going through surgery if it turns out to be for nothing or somehow exacerbates the problem. Then again, nothing ventured, nothing gained? Yes, rest can help some people heal, but that's usually early on, takes about 2 weeks of strict bed rest and typically doesn't work in someone who has had problems as long as I have. My doc is NOT recommending that. Has anyone on these boards been through this surgery or experienced similar symptoms?

I came on this board I believe in early September and havn't seen anyone with a fistula. A friend of mine who I havn't seen in several years had surgery to repair something in the ear. It was around ten years ago......I ran into her Mom at the market and she said Sharon was having surgery that day to repair a hole in her ear. When I ran into my friend a few years ago she was fine. She said when she first got up after the surgery she was off balance.......but she is fine. I am not sure if she had a fistula.......I am guessing she did.......what other reason would they do surgery? Good luck to you ......let us know how you are .

Well I dont know if this will help, but I have the perilymph fistula that you may have. I received this injury from a work related vehicle crash in 1997.
I am a work a holic and wanted to return to duty ASAP. I saw two seperate Dr. about my condition. Spinning, falling backwards, memory loss, confused, stuttering when tired (which was more often), poor eye sight at night and poor weather, extreme fullness in ears. load ringing, etc. These Dr.s said I need to get back to work and start exercising more to get into shape. I have always maintained a healthy work out period and was in good weight but they were considering I was tired and depressed from not being at work.
It came to ahead when one day I ended up in a town about 8 miles away and I didnt know how I got there. I was like a zombie. That was kinda the last straw for my new wife as I was doing these zombie routines more often.
I dont remember a whole lot after that, but she found a Dr. Grimm who refered us to Dr. Black here in Oregon.
These men saved my life. I do not think I would have survived.
I tried the initial 6 week bed rest but it failed for me and surgury was performed.
Now your on your back with your head at 30 degrees. All day unless sitting with your head supported eating a carefully balanced mael 6 times a day. And using the bathroom. Thats for six weeks the you are allowed up a very short time each hour (5 min) then it progresse slowly. Yes, it was the most difficult task I have ever had to do in my entire life.
I did return to work after 1 1/2 years.
I reopened the damaged ear last year and I may have the other opened as well. I have just had my second surgury and are hoping the bed rest will close the other ear.
I feel dizzy laying. I cant hear out of the repaied ear (Its suppossed to get better with time), back hurts from laying around, cant read as I dont remember what I read. Tv and computers for a short time as the movements get nausea. I have three small children who like most like to run, play, yell, and goof off. Abd it drives me up the wall. I hate loud noises. the running makes my stomach turn. Not a very good father figureI have become.
I am told this will get better and I may live a semi normail life. But never SCUBA (my ex-passion), flying. weight training, quad racing etc.Seems like all the fun stuf is over.
Ok enough of my whinning about me. Please forgive me for that.
I owe alot to my wife who had to take care off me during all this. And to Dr Black.
You need to make sure the Dr. you see is very familiar with this fistula. If he is do not wait! Know matter how hard it is to be down, do it. It will only get worse and you'll never want to go outside. You become a hermit. I think if a stubborn-fool headed dummy like me can go through it, anyone can. I would be most happy to assist you in any way, I cant think of anyone going through this with help of some sort.
And, dont let anyone say you are a faker. You look OK on the outside and no one can see how you are feeling inside. Please take care and good luck.
Call anytime. Dave Bloomstrom @msn.com

sandoval: May I suggest you check Dr Timothy hains website, he has some good info about fistulas.

From what I understand, there are a few docs believe they are very common (these are the same docs that do all the research), some docs don't believe they exist, but majoirty of docs think they exist but aren't very common. The docs who are desparate to jump in and do surgery are often in the first category, the surgery and susequent bedrest seems to have only marginally better results than bedrest alone (which works in a lot of cases) - which may be because a lot of people with fistulas may not have a fistula anyway. It is believed that the fistula heals over between acute episodes, but the healing process is incomplete hence easily damaged, therefore prolonged periods of bedrest (usually more than 2 weeks) theoretically could help at any stage of the problem. I guess what I'm saying is it may be worth trying a period of bedrest (though you may have already tried that!!) to see if that helps before pushing on with surgery..

Good Luck!!

Hi to all! My initial post was nearly a year ago, but I am amazed that it's resurfaced. Thanks for all of the comments -- I am actually seeing Dr. Hain now - I went to him for a second opinion regarding surgery, and his first thought was that it's NOT fistula. However, that said, I'm still here (lurking on the board) so as you've probably guessed, I am not better. He's been treating me for migraine, but that's not working and it may well end up that I do have a fistula. He's put that back in the list of possibilities, but we're still exploring options for right now. While my attacks have become more frequent, I've become much better at coping through them. Thanks for your comments. Penny

I had a perlymphatic fistulae on top of having bilateral Meniere's. With the Meniere's I have vertigo, extreme fullness in ears and tinnitis (ringing) in both ears. My right ear started getting worse realtively fast after Spring break back in March of this year. My vertigo got worse, and I was looking at by August possibly needing a walker to walk. I could not even drive at night because of the effect that the fistulae was having on me. I had undergone tests on both ears. The main test that was used to diagnose the perilymphatic fistulae was the test that they test the pressure in your inner ear. I had the same reaction twice to the same test, extremely dizzy and extremely nauseous. My ENT sent me to a ENT specialist that specializes in Balance Disorders. He ran basically the same test on me and told me that my ENT was correct in his diagnosis. He told me that my inner ear sac might have been damaged due to the airplane that I was in, back in March) decended too quickly and the pressure made the sac spring a leak. He said that any change of pressure that happens too quickly can cause a perilymphatic fistulae, and that they usually see this condition in people who subadive. He also told me that I had to have the surgery, since my vertigo was real bad. He also stated that the surgery may only help my vertigo 90%, that it was not 100%, and that I would probably loose about 1-2% of my hearing in my right ear. I told him that 90% in helping the vertigo was better than nothing, and that loosing only a minor part of my hearing was better than going totally deaf. So I had the surgery in July of this year. Two weeks after the surgery I was able to return to my job. Presently since the surgery I have not even had one bought with dizziness. I am able to go swimming, I am able to sing again without getting dizzy. In the past two weeks I had a hearing test to see how much of my hearing I lost in my right ear. I have only lost .5% of my hearing. I can drive now at night and not get dizzy. Since my Meniere's is not severe, the surgery did help me from loosing my hearing, so if I do loose my hearing now from the Meniere's is won't be for another 20 years. Right now I am 48. Not bad. With my Bilateral Meniere's I have to watch my salt and caffiene intake. I am able to keep it under check with watching my diet. With some people if the Meniere's is seviere then they have to go on medications to help with the symptoms. Why suffer through something that can be helped? My qaulity of life has improved tremedously. I live in Phoenix, Arizona and the ENT who did my surgery is with the Arizona Hearing and Balance Organization. He is the best at what he does here in Phoenix, and having the right doctors and not being afraid to talk to the doctors makes a very big difference. As long as you keep working with your doctor you'll be in good hands. Take care and God bless.

What part of the inner ear was your fistula at... oval or round window? Also did your tinnitus worsen after the surgery?

Sandoval

noticed you are being treated by Dr. Hain for migraine. what meds has he got you on and how long have you been on them.
I live in London and have been told have migrainous vertigo (2 weeeks ago although have been suffering for 8 mths) and been prescibed pizotifen.
I ask because I e-mail Dr Hain and in a quick reply said it possibly could be migraine and because of that I requested to see an neuro-otologist and all the tests came back normal so they said it probably was migraine. told they have had a lot of success with pizotifen. (hosp that i went to was the National hosp for neurology and neurosurgery in london (if anybody from the uk reads this))

regards Phil

Hi, Phil. I am not familiar with pizotifen (maybe not available in the U.S.?). What sort of drug is it? Is it helping? I have been on verapamil, a calcium channel blocker, for about 8 months -- upped the dosage 3 months ago as last effort with this drug, but no results. Dr. Hain wants to try me on Trileptal (an anti-seizure med) next. I'm a big drug "chicken" so while the verapamil is not working, it's also been nice as it's had no side effects -- kind of pointless though if it doesn't improve the vertigo. So, I guess I'll "suck it up" and move on to the next thing.

Sandra, Thanks for the note of hope. It is great to hear a success story -- all I seem to hear about are the "botched" surgeries -- probably because many of the success stories don't feel the need to come back to the boards. I have an appointment next week with Dr Hain so we'll see where we're going with this thing. I'm going on 3 years now, and while I cope, it sure does stink always wondering when the next one will hit. With the surgery, though, I have no idea which ear they would even do because while I have some tinnitus and pain in both -- none of the tests indicate a problem with either ear -- although the one test no one has done is the actual fistula test. Maybe I can ask for that next week. Penny

It sure was nice to hear that at least someone has come through this surgury well. I am going to hope myself for the same.
As you live in Arizona, do you feel the dryer climate without the constant barametric changes has helped you deal with this? I know that alot of the nausea and fullness can be related to hydrops. And I also eat carefully balanced meals. Very low in salt and sugar. I cant say if this has helped as here in Oregon we are into our poor weather. This summer however, I did feel better when it was dryer.
Both the round and oval were opened in my left ear. I was told more than likely the right is open as well. I do not know if one or both. I was told if this is the case, then I would expect to become worse after surgury until the other ear is repaired. I didnt think it would be this bad though.
My wish is that people could try to understand what we are going through. It seems if you dont have a cast on, then your ok. Well, it just isnt so. Dave

Sandoval,
pizotifen is an antihistamine and its meant to be a preventative type of drug. if it doesn't work i suppose the hosp wil try another drug maybe verapimil. they said wait a month but i've read on the net it could take 2 to 6 myhs so who knows

Phil