Probable Perilymph Fistula Outlook?

[GraceAP]

Hey Everyone! I (F33) experienced what I assume is an inner ear barotrauma after a dive nearly 10 weeks ago. I was descending down around 50ft and having trouble equalizing my left ear. After a forceful Valsalva I noticed a rush of cold water in my left ear along with loud tinnitus. I didn't think anything of it during the dive because there was no pain. We continued the dive down to 74 feet, ascended without triggering any alarms, and did a safety stop at 20-15 feet for 10 minutes. When I surfaced it was clear that the tinnitus was very loud, and I was dizzy and nauseated. The latter two symptoms persisted for 2 hours, and the tinnitus never went away. The next day we decided to do another dive. The tinnitus hadn't stopped, but I was no longer dizzy so I thought I could dive again. This dive was only to 45 feet for 30 minutes. After surfacing I had extreme vertigo and couldn't walk. I threw up multiple times but felt better after taking Dramamine. The following day I woke up and had bad vertigo as soon as I stood up. Tinnitus was still there. I went to urgent care and they didn't see any issues with my ear so they said I'd get better in time. Because the tinnitus was so distressing I looked up what could be happening and saw that I should get on steroids in case of hearing loss. I went to the ER 5 days after the accident and started a three-week course of prednisone. A hearing test on day 6 confirmed moderate hearing loss in my left ear above 6khz.

Two weeks later I had another hearing test with a Dr. at UCSD who's an expert in tinnitus and they didn't see any hearing loss at all. I still had bad tinnitus but thought this was a good sign. Because I already had an MRI and follow up hearing test scheduled, I got my hearing tested again at 4 weeks after the incident and they again detected moderate hearing loss above 6khz. I sent the results to the UCSD Dr. who then suspected a perilymph fistula and performed a blood patch (now 6 weeks after the injury). That procedure was about 4 weeks ago, and the tinnitus is still there, along with moderate hearing loss above 6khz. I know this is a rare injury, and a rare procedure as well, but I'm wondering if anyone else here has experienced the same injury or treatment and can give me an idea of what the long-term recovery looks like? I started an antidepressant (Effexor) because the tinnitus was giving me panic attacks, and I'm now dealing with side effects from that and just all-around feeling sad that this tinnitus might be permanent. It fluctuates all the time, sometimes being high-pitched, and other times sounding like a mild rushing. Sometimes it zaps in and out multiple times a minute. Does it ever stabilize at least? I'm also experiencing some mild hyperacusis or reactive tinnitus. Most sounds don't bother me, but the occasional high-pitched snap (such as a plate falling) gives me an "echoey" tinnitus sound that goes away after a few seconds but makes me cringe every time. Did anyone experience this and have it go away? I'm so grateful for any input anyone with experience in this type of injury might have.

Thanks!

 

[Johnboy70_99]

I went through something very similar, a bit over a year ago. Pretty much the same thing.

I wrote up a pretty good summary here:
Post in thread 'Barotrauma and tinnitus'
Barotrauma and tinnitus

I have adjusted to the tinnitus over time, as most people do. I just got fitted for hearing aids which have helped a bit, and I find that wearing headphones calms my ears down.

There is a tinnitus forum which has one helpful info. But don’t obsess over learning more as the more you focus on it the more it will bother you. Even if it doesn’t go away most people just get used to it over time, the brain naturally tunes it out as if you were in a room with a fan running and after while you don’t notice the fan.

I am headed out to my first real dive trip again in 2 weeks. I think I was ignoring some inadequate ear clearing before the incident, as my left ear was always “crunchy” and seemed waterlogged during long trips, while my right ear is always perfectly fine. I am going to continue to carefully clear my ears and also stay on Flonase which I use for allergies and may help my ear cavities stay clear.

 

[GraceAP]

I went through something very similar, a bit over a year ago. Pretty much the same thing.

I wrote up a pretty good summary here:
Post in thread 'Barotrauma and tinnitus'
Barotrauma and tinnitus

I have adjusted to the tinnitus over time, as most people do. I just got fitted for hearing aids which have helped a bit, and I find that wearing headphones calms my ears down.

There is a tinnitus forum which has one helpful info. But don’t obsess over learning more as the more you focus on it the more it will bother you. Even if it doesn’t go away most people just get used to it over time, the brain naturally tunes it out as if you were in a room with a fan running and after while you don’t notice the fan.

I am headed out to my first real dive trip again in 2 weeks. I think I was ignoring some inadequate ear clearing before the incident, as my left ear was always “crunchy” and seemed waterlogged during long trips, while my right ear is always perfectly fine. I am going to continue to carefully clear my ears and also stay on Flonase which I use for allergies and may help my ear cavities stay clear.

Thanks for your reply! It’s nice to connect with someone with a similar injury. Did your tinnitus ever have a reactive nature to it? If I snap my fingers near my left ear, I can hear the tinnitus briefly increase in loudness and pitch. In general, the loudness and pitch seem to be all over the place lately. Did you experience these fluctuations? Did it stabilize in time? Do you think yours got slightly quieter or lower pitched?

 

[GraceAP]

@Johnboy70_99 , I just read your post about how it started to calm down around 6 months. That’s good to hear! I feel like my tinnitus is very intrusive and has been on my mind pretty much 24/7 since October 12. I’ve got a lot of other responsibilities so the overall anxiety has really ramped up, and I’ve started an antidepressant (Effexor) that my Dr thinks will help quiet the tinnitus. Did you try any medications to help with the T? Have you considered getting Lenire?

 

[Johnboy70_99]

Thanks for your reply! It’s nice to connect with someone with a similar injury. Did your tinnitus ever have a reactive nature to it? If I snap my fingers near my left ear, I can hear the tinnitus briefly increase in loudness and pitch. In general, the loudness and pitch seem to be all over the place lately. Did you experience these fluctuations? Did it stabilize in time? Do you think yours got slightly quieter or lower pitched?

It is reactive, but not immediate. If I sit in a room with the TV on it gets bad after while. Initially I would get the hyperacusis (not pain, just like distortion of loud sounds) but that does not seem to be noticeable anymore. The pitch has never changed for me. I think in general it's quieter although stress brings it back louder.

I have recently quit coffee entirely. It seemed to increase it and my anxiety in general. Which is tough for me because I love coffee but the drop of my anxiety levels is significant without it.

 

[Johnboy70_99]

@Johnboy70_99 , I just read your post about how it started to calm down around 6 months. That’s good to hear! I feel like my tinnitus is very intrusive and has been on my mind pretty much 24/7 since October 12. I’ve got a lot of other responsibilities so the overall anxiety has really ramped up, and I’ve started an antidepressant (Effexor) that my Dr thinks will help quiet the tinnitus. Did you try any medications to help with the T? Have you considered getting Lenire?

It was on my mind 24/7 for the first few months, now not so much. If I'm busy I can forget about it for days. I have never tried meds. I am on enough already for other unrelated things that my stomach probably wouldn't like them.

The ent I saw didn't recommend lenire, he said it didn't work.

 

[duke dive medicine]

Hey Everyone! I (F33) experienced what I assume is an inner ear barotrauma after a dive nearly 10 weeks ago. I was descending down around 50ft and having trouble equalizing my left ear. After a forceful Valsalva I noticed a rush of cold water in my left ear along with loud tinnitus. I didn't think anything of it during the dive because there was no pain. We continued the dive down to 74 feet, ascended without triggering any alarms, and did a safety stop at 20-15 feet for 10 minutes. When I surfaced it was clear that the tinnitus was very loud, and I was dizzy and nauseated. The latter two symptoms persisted for 2 hours, and the tinnitus never went away. The next day we decided to do another dive. The tinnitus hadn't stopped, but I was no longer dizzy so I thought I could dive again. This dive was only to 45 feet for 30 minutes. After surfacing I had extreme vertigo and couldn't walk. I threw up multiple times but felt better after taking Dramamine. The following day I woke up and had bad vertigo as soon as I stood up. Tinnitus was still there. I went to urgent care and they didn't see any issues with my ear so they said I'd get better in time. Because the tinnitus was so distressing I looked up what could be happening and saw that I should get on steroids in case of hearing loss. I went to the ER 5 days after the accident and started a three-week course of prednisone. A hearing test on day 6 confirmed moderate hearing loss in my left ear above 6khz.

Two weeks later I had another hearing test with a Dr. at UCSD who's an expert in tinnitus and they didn't see any hearing loss at all. I still had bad tinnitus but thought this was a good sign. Because I already had an MRI and follow up hearing test scheduled, I got my hearing tested again at 4 weeks after the incident and they again detected moderate hearing loss above 6khz. I sent the results to the UCSD Dr. who then suspected a perilymph fistula and performed a blood patch (now 6 weeks after the injury). That procedure was about 4 weeks ago, and the tinnitus is still there, along with moderate hearing loss above 6khz. I know this is a rare injury, and a rare procedure as well, but I'm wondering if anyone else here has experienced the same injury or treatment and can give me an idea of what the long-term recovery looks like? I started an antidepressant (Effexor) because the tinnitus was giving me panic attacks, and I'm now dealing with side effects from that and just all-around feeling sad that this tinnitus might be permanent. It fluctuates all the time, sometimes being high-pitched, and other times sounding like a mild rushing. Sometimes it zaps in and out multiple times a minute. Does it ever stabilize at least? I'm also experiencing some mild hyperacusis or reactive tinnitus. Most sounds don't bother me, but the occasional high-pitched snap (such as a plate falling) gives me an "echoey" tinnitus sound that goes away after a few seconds but makes me cringe every time. Did anyone experience this and have it go away? I'm so grateful for any input anyone with experience in this type of injury might have.

Thanks!

I'm sorry to hear about your experience. Recovery from PLF is highly individual. A lot depends on how quickly it's recognized and definitively treated; unfortunately you were pretty far out from the injury when that happened.

Tinnitus is not curable but it is treatable. You may want to consider a masking app like Neuromonics; I've used it personally with some success. You can program it with your own audiogram results and it plays a masking noise along with relaxing music. You need earbuds with really good high-frequency reproduction, and the developer advises using the app at least two hours per day.

In your case, the tinnitus could be the brain's response to your high-frequency hearing loss. A hearing aid in the affected ear might be of benefit.

Best regards,
DDM

Best regards,
DDM

 

[rmorgan]

I have what I think is probably mild-to-moderate tinnitus, without much hearing loss (and what there is, I blame the Dead for). I'll check out Neuromonics (thanks, DDM). I'm sorry to hear that Lenire seems not to be useful--I've been looking for a practitioner in hopes it lives up to its billing.

Enough sleep is the most important thing for me, and I use overnight earbuds (there are some new ones, sold by Ozlo, which are comfortable and can stream audio (I'm using the Sleep Channel on Sirius these days) or a variety of white noise things. Fortunately, I've so far not seen any connection between the degree of tinnitus and diving, but there are enough cautionary tales that I know it's lurking.

One other thing: I'm a fan of Dr. Mehta's sinus products, especially the electric-pump version. When I use it for several days before a trip I barely need to clear at all. Hard valsalva maneuvers are scary, even when they're not painful.

Good luck with it, Grace. You're certainly not alone.