Disclaimer: I am NOT a physician or at all trained in the medical field. All content within this site is my opinion based on my personal experiences
What I learned about perilymph fistula, or perilymphatic fistula repair surgery:
- First, here’s a video of the procedure.
- The procedure typically takes 45 to 90 minutes to perform
- The patient is under general anesthesia
- The complications can include: partial facial paralysis since the facial nerve can get in the way, and partial loss of taste since that nerve is in the area as well or loss of hearing
- There are many surgical variations including where to get graft material from, use of gel foam, removal (or not) of packing material, post-op requirements and much, much more
- Personally, I felt 80-90% relief of most symptoms within a day after surgery
- The post operation care is EXTREMELY important. Here are my recommendations:
- Get an overstuffed chair. Your head can’t be lower than a 20-30 degree angle when you sleep and you’ll be on bed rest for several weeks so just get a super comfortable reclining chair. Wedges on beds can make you slide down and that can be dangerous.
- Make sure the room you’re in is as dust free and germ free as possible. The germ free is obvious. The dust is so that you don’t ever sneeze or cough. The slightest sneeze or cough can undo the surgery.
- Don’t even think about going on stairs or an elevator or walking around.
- Definitely don’t try to open a can or bottle or jar – just rest and let other people take care of you like you’re supposed to.
- Plan to be on bed rest for at least 3-4 weeks. The type of bed rest I’m talking about is you only get up to go to the bathroom. That’s all you can get up for.
- Have someone near you all the time that can help you sit up in your chair, put on your socks, help you walk to the toilet, get you food and meds, and the other things you’ll need. Don’t try to sit up by yourself. Flexing your muscles can cause surgery-ruining pressure.
- I set up a TV with a DVR, and a computer with a wireless keyboard and mouse connected to it in front of my chair so that I would always have something to do. It’s a long haul, but worth it.
- Your ear and graft incision will likely itch – avoid scratching them as this can disrupt the healing.
- Gently clean dried blood at your ear opening with q-tip – but not inside the ear at all. Fresh blood could continue to flow for several days post surgery.
- Only eat soft foods for the first several days after surgery. The muscles required for chewing hard foods can damage the repair.
- Chew on the side of your mouth opposite the surgery very gently when you do start on less-than-soft foods.
- Silence can be deafening with the ringing in your ear(s). It may help to keep a very quiet white noise on. The tinnitus should get better each day.
- Talk minimally and softly. Loud or even normal speaking volume can aggravate the ear. Make sure other people around you know to talk softly as well. The pitch of some voices may hurt more than others. You’ll need to ask them to whisper.
- Brush your teeth gently and frequently to minimize the chance of bacteria entering the Eustachian tubes. Do NOT use an electric toothbrush – the vibration can be damaging.
- While on bed rest, keep your feet slowly wiggling to keep blood flowing.
- Avoid tensing muscles in the abdomen or core as this can put pressure on your ears.
- Clenching your fists gently can also help keep blood flowing.
- Drink 64 oz of water daily unless otherwise directed by your doctor.
- Do not bear down at all. If stool won’t flow without bearing down, add milk of magnesia or miralax 1 x per day to your prescribed stool softener, or check with your doctor for instructions. Bearing down is possibly the most dangerous thing you can do to the fragile repairs.
- Avoid popping your ears even though you may feel it is needed.
- You may hear a faint, delayed echo of sound in the repaired ear. This is normal and should go away within a few days.
I am now 1 week post surgery on my left ear. Unlike the majority of his cases, my surgeon could actually see the leaking fluid in both ears. The right ear leaked from the round window and the left from the oval window.
After the first surgery, I still got some headaches, and could still taste CSF a few times each week. Now, after the second surgery, I’ve only had to take pain medication (including over the counter weak stuff) twice. Both of those were due to me overdoing it after surgery and not following my own recommendations above.
This is the first week in over 18 months that I haven’t had a headache due to leaking Cerebral Spinal Fluid (CSF).
I’m now 7 weeks post surgery on my right ear and have regained about 80% of my hearing in that ear. I’m at about 20% hearing in my left ear, but every day the ringing diminishes a bit and the hearing increases a bit.
May 16, 2013. It’s been about year since my surgeries. My hearing is great. The ringing is gone altogether. My balance is much better – although I do still get a bit off-balance at times and have to take a step to steady myself. If I had the choice of whether or not to risk the PLF surgery, there’s no question that I’d do it again even if I was left with the worst of the complications. I did have partial taste loss after the second surgery for a while. That was very odd. Half of my tongue didn’t taste anything for several months. It was more interesting to me than annoying to be honest. And it’s gone now. I have no remaining PLF symptoms at all. Now if the tubes in my ears would fall out already, I’d be back to normal. Some things I can do now include mowing the lawn on our riding mower. The vibrations don’t hurt me. The terrible bumpiness of my lawn due to (literally) dozens of gopher holes doesn’t bother me. I can open jars without it hurting my head. I can tickle my kids. I can have conversations with my children without their voices hurting me. The simple, wonderful joys of life are back.
My post-concussion symptoms are now readily separable from the PLF symptoms. The post-concussion symptoms continue to diminish over time. I don’t necessarily notice daily or weekly improvement. However, when I look at what I can do now versus a few months ago, I can see great improvement.
If you are considering PLF surgery, I strongly advise you to contact Dr. P. Ashley Wackym before your surgery. He is one of very few doctors in the United States that actually believes perilymph fistulas are real. He’s a top member of the research staff at Legacy in Portland, OR; and has a lot of data on PLF surgery including videos of patients before and after surgery. Just seeing the stark contrast in my own video before surgery, a day after surgery, a few months after surgery and then several months after surgery is remarkable to me. I don’t at all resemble the same person before versus after. Dr. Wackym is also one of the more conservative doctors in terms of post-operation care. He and his staff have many years of experience watching patients succeed, and occasionally break the rules and ruin the repairs. You typically get one shot at insurance paying for the repair. Make it count by following post-op care to the T.