Perilymh fistula. Life after that?

[DoraX]

I`m not a diver. Never even tried.
As I have seen older discussions I thought you might give me some information about perilymph fistulas. I´m kind of desperate.

Six weeks ago I had three flights in a row. I got very bad ear pain during the last one. Before I left I had a flu, but it was almost gone by the time I got to the plane.
After the flight I had ear pain, but nothing else. After a week I got a mild dizziness and for a one day I had a little bit of nausea too. Then I only had a little bit
of dizziness, mostly in the morning. My left ear was hurting a lot (and I felt eustachion tube is blocked) and before I got back home, I got ventilation tubes. By that
time doctors thought I have just inner ear irritation due to middle ear barotrauma.

After flights back home I have had dizziness (when I walk or stand I feel like I´m on a boat), tinnitus and air pain. The tympanic membrane is ok.
MRI is taken and I have hearing loss only -20db. Right now doctors are just waiting and saying I need to rest. If there is a fistula, it might
heal on its own. It´s holiday period and all the ear surgeons are on a holiday. In January I might have an operation.

I´m very worried about my future. May I ever get rid of dizziness and pain? Is it possible to fly after a few years? Will I ever work anymore. I`m 37 years...

If you just know someone to give me some information. I would really appreciate it.

 

[Duke Dive Medicine]

Dora,

Sorry to hear about this. The only way to definitively diagnose perilymph fistula is through surgery. Am I reading this correctly in that your only symptom at present is hearing loss? If your symptoms are resolving, then treatment is usually conservative and consists of rest in an upright position, minimal activity, and stool softeners to prevent straining during bowel movements. Surgical repair is usually done only if symptoms do not resolve within 24 hours or so.

Any residual vertigo typically resolves as the undamaged vestibular apparatus "takes control", so to speak. Divers who suffer PLF are often advised not to dive any more because if the remaining vestibular apparatus is damaged, the vertigo that results could be permanent and debilitating. Flying involves a much lower pressure change so the likelihood of you not being able to fly eventually is minimal; however, the ENT physician who is treating you should be the primary source for that advice.

Best regards,
DDM

 

[doctormike]

+1 for what DDM said.

There are a number of threads here where I have gone over the details of this, and the diagnosis itself is often controversial. Here is my basic overview of the situation as it relates to divers, some of this may be interesting to you or relevant to your current condition. However PLF related to diving is very different than the "spontaneous" PLF described elsewhere.

Sorry we can't be more helpful over the Internet, if you want a second opinion you can PM me with your location, and I might be able to give you a recommendation.

 

[DoraX]

Thank you for your answers!

I still have dizziness (after 6 weeks of flights I caught barotrauma). Pressure feeling in the ear and sharp pain at times. Tinnitus is pulsatile. I hear circulation of blood. Hearing loss is not very serious (20db).
Rest makes the symptoms better. Any very light work at home makes them worse. The last four weeks I have done only very light things though, because I try to wait possible spontaneuous healing of fistula. Right now I find the pain and pressure feeling in the ear the most irritable. Dizziness is pretty mild. I only feel it when I walk. It´s like being on a boat. It is worse in the morning. In the evening it´s almost gone.

The onset of the symptoms was weird, because I didn´t feel dizzy until after one week of the flights I suffered massive pain in the ear. During one day I felt very dizzy and had nausea. That time I didn´t have tinnitus and hearing loss was small. That´s why I missed initial treatment totally. The doctor in Hong Kong thought it is just a irritation of the inner ear, but no damage. (It´s quite rare to have serious barotrauma in the airplane and maybe rare to have symptoms one week after traumatic event)

But now it seems I really have some kind of inner ear damage, because the symptoms are not going away in six weeks. This waiting is the hardest part.

Sorry about my english, I´m not a native speaker.

 

[DoraX]

Two and half months after the flight I had a massive ear pain, I still feel dizzy (like being on a boat while walking and standing up). At times I feel very light-headed and I need to rest a lot. When I lay down or sit, I mostly feel ok. I still have tinnitus. Sometimes that pulsatile kind of noise, but two other sounds too. My ear is not hurting that much anymore, but I still have sharp pain a few times a day and mild pressure feeling. Hearing loss is mild. Only 20 db. This week I will have an explorative operation to check inner ear windows and patching. Scared...

 

[doctormike]

Thanks for keeping us posted... I would be interested in knowing what the results of the exploration are. I know that it's scary, but usually the exploration is a brief, limited procedure, and in the hands of a good otologist it is a safe operation.

 

[DoraX]

My left ear was operated on Wednesday and visible leaking of perilymph was found in the membrane of round window. It was patched by fascia and tissue glue. Doctor explained that I have very deep fissura near the round window which was also patched.
Now I feel worse than ever (post.op. day 3). I have never been this dizzy and nauseous. I barely can walk until bathroom. This scares me a lot that I´m really doing worse not better. Is there anyone there gone through this? Is this really bad sign and means that patching already failed?

 

[doctormike]

Is this really bad sign and means that patching already failed?

I don't do this procedure, but many operations are followed by a recovery period that might have new symptoms. But this question is definitely one that it best answered by your surgeon. Even if someone here had the same procedure, every ear case is different.

Talk to your doctor, it might be important for him or her to know what you are feeling, either to manage your symptoms or to reassure you if this is to be expected.

 

[DoraX]

Post-op. Day 6.
Feeling still very dizzy (more dizzy than never before operation). I'm not that nauseaus anymore than three days ago. I can walk without real feeling of falling, but dizziness is serious. Ear feels full and rings loudly at times. I can't hear very well. No pain though.

 

[DoraX]

Post.op.day 16
Finally the first day with preopeorative level
symptoms. And also my left leg feels normal. The right one still feels like I'm stepping on a soft surface. Dizziness is moderate.
These two weeks have been SO rough. I thought I will never get better. I was so dizzy after the operation, I could barely walk for a first few days. Then It got a liitle bit better, but I was nausesus at times during last three days.

Now I just wait if the right leg starts feeling
normal and I get rid of the remainig dizziness.