Perilymph Fistula Recurrence 24 Years Later
Apr 12, 2014
In the spring of 1990 after a chronic right middle ear infection, I began having bad vertigo, nausea, and disequilibrium problems. I saw the ENT recommended by my PCP and after testing that came back normal was scheduled for exploratory surgery. A perilymph fistula was visualized and patched. Recovery was normal with some slight dizziness continuing for a few months and then resolving. Postoperative testing revealed no loss of hearing from the surgery and I was released from care to resume normal life.
Fast forward to March 2014, severe disequilibrium, tinnitus, and noticeable hearing loss brought me back to the same ENT (A relief, as he remembers me as being his only visually confirmed PLF) Testing showed hearing in the right ear normal but not as good as the unaffected left ear, other testing showed a possible recurrence of a PLF in the the same ear (right). I am scheduled for surgery on April 30, 2014.
There was nothing during this time that would account for the fistula to recur, no heavy lifting, head trauma, air travel, upper respiratory illness, etc. He feels that I may have a predisposition to increased pressure in my inner ear that causes the fistula to recur. Has anyone heard of this? And, if so, why would it take 24 years to happen again?
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My story is as follows: about a month ago, I began having ear pain that would alternate between ears. After a few days of this, the pain settled in my right ear, where I developed both pain and fullness that persisted for about two weeks. My ear constantly had the sensation that it needed to "pop," such as what one experiences when on an airplane. I went to my GP after a week of these sensations, who told me that it was likely Eustachian Tube Dysfunction and that it would resolve soon. She prescribed decongestants, antihistamines, and a steroid nasal spray. I took Sudafed and Allegra (but not the spray, as I am scared of steroids) but they did not seem to help.
Well, in the meantime, my blocked ear was annoying the crap out of me, so I decided to go online and look for some home remedies to try. One thing that I found was something called the Valsalva maneuver, in which you close your mouth, pinch your nose and blow out against closed airways to unblock the ear. I tried this several times over the course of a few days in attempts to get my ear to unblock. Most times it was difficult to get the right ear to "pop," and even when it did, it did not alleviate my symptoms.
Shortly after trying this maneuver, however, I read that the Valsalva maneuver can actually DAMAGE your inner ear and cause a perilymph fistula if done too forcefully. (I don't think I did it too forcefully, but I can't be sure.) Learning this sent me into a panic, and ever since, I have been experiencing a vague, constant dizziness that lasts all day. I have had trouble focusing my eyes and it feels, at times, like my brain is being sucked up and out of my skull (sorry). In the meantime, the sensation of fullness and pain in my right ear has improved greatly, but I am still being plagued by this constant dizziness. This dizziness has been present for a full week now. I have no sensitivity to loud noises, no hearing loss, and no episodes of vertigo. I do have a bit of wooziness when I am a passenger in a car, and I have felt extremely, unnaturally ill and fatigued throughout this ordeal. For those of you who have had PLF, does this sound like it could be a possible PLF? Is it even likely that I acquired a PLF after performing the Valsalva Maneuver?
Thank you so much for your help. I am hoping and praying that this dizziness is a fluke and not related to a PLF or inner ear damage, but the possibility scares the ****** out of me, regardless. I have had an extremely stressful year between losing my job, acquiring a crippling hip injury, and dealing with a host of other health issues, and the possibility of chronic dizziness is not something I feel capable of dealing with at this point.
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Anyone out there had this surgery? I'm in week 3 and wondering what to expect going forward.
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To cut a long story short - mid August 2014 I did a sinus rinse for chronically blocked sinuses. It went very wrong and I ended up with water trapped in my left middle ear. It didn't come out by itself and the pain and pressure was getting too much. I saw a GP and we agreed on using a nasal balloon to equalise the ears and try to get the water out. I also tried a few valsalva actions.
One day (first week of September), I was using the balloon when I felt a painful loud click in my right ear. This is where my real problems started.
I now deal with: constant tinnitus in right ear, dizziness, vertigo, some nausea, really bad head pressure, auras, vibrations and buzzy feelings throughout body, deep pain in ear - can almost feel blood or fluid in right ear.
Saw GP and it is a suspected Perilymph Fistula of the round window in the inner ear. I am seeing an ENT privately, hopefully in the next 2 weeks. Thing is, I am in England, UK and I am worried that they don't really deal with PLFs. Then I will be stuffed!
I am currently doing as much bed rest as I can as I read online this is best at this stage. I am however very very worried about what has happened. I am worried about leaking CSF fluid too. I certainly have enough head pressure.
Can this really heal with bed rest or do I need surgery? Also, I am scared about my tinnitus getting worse with surgery. Anyone who has had PLF repair surgery, what was the outcome? Did your tinnitus get worse or better in the end? Did the head pressure go? Has anyone recovered just with bed rest?
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I am going through a possible plf and trying to talk to people who know about these. Please if you are still around I'd love to talk. There are very few people out there and. Very little information.
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I was hoping for some advice on a problem that I've had for 3 years. My main problem has been on and off vertigo and imbalance, however I don't think I have rotational vertigo because most of the time I just feel like inside my head is spinning? It also feels as if the ground is sinking beneath me.
Dizziness started 3 years ago, about 2 months after a serious bout of the flu which took months to recover from. At the time my ears were extremely blocked and I would do the Valsalva maneuver to help unclog my ears. It wasn't until now that I discovered you aren't supposed to do that? Anyway my dizziness was consistent 24/7 for nearly 1 year, at which time my symptoms seemed to disappear. As of April this year my symptoms returned.
Over the years I have been to numerous GP's, ENT's, neurologist, and all of which were unsure of what was going on. Most of them have said they don't believe it's Meniere's disease. My main GP said I DIDN'T have fluid in my middle ears, however since then 2 GP's have both confirmed that I DO.
Current symptoms:
Brain fog
Dizziness/vertigo
My ears feel wet in the morning. Not enough to wet pillow
Tinnitus in both ears, slightly more prominent on the left side
Fatigue
Difficulty concentrating/problems with memory
Tingling/electric shock feeling on left side of scalp behind left ear
Anxiety
GERD and gastritis
A couple of things seem to exacerbate these symptoms, such as anxiety, hot and humid weather, having a hot shower (I now have to have cold showers, before I would have to sit down), menstrual cycle.
So I am pretty convinced that I either have a perilymph fistula or middle ear fluid. I have been using Nasonex for a couple of months which seemed to improve symptoms but now I am starting to feel worse again. My now current GP has suggested Ventilation tubes/grommets, however if I actually have a perilymph fistula will this improve symptoms or not have any benefit at all? I also have been prescribed SERC but I do not think it will help, as 2 years ago I took it and it made my symptoms WORSE.
I am wondering if I may have damaged my ears years ago when I had the flu by constantly trying to pop my ears. I have been allergy tested for Molds, grass, pet dander and dust mites, all negative. I have also been tested for MS which was negative, and all the routine blood tests etc. MRI showed I have a mid-septal deviation (my nose isn't straight) and previously enlarged adenoids, but apparently was of no clinical significance.
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Though I am actually considering that I have something called basilar migraines, which in many ways can mimic fistulas, I want to make sure that there is no chance of small bilateral fistulas in my ears.
Essentially, I have had progressive hearing loss for 11 months now, along with a number of other symptoms that began to flare up in August. I have a history of 3 separate acoustic traumas that occurred earlier last year, and I have heard that under extraordinary circumstances acoustic traumas can cause fistulas at the oval window.
My triggers have included loudish noise above 80 decibels, middle ear pressure changes from flying on an airplane or wearing earplugs, strenuous exercise, lifting heavy objects, and clenching my teeth too hard at one point (I was angry).
Most times when I have an extended exposure to any of these factors, I am usually left with a small degree of permanent bilateral hearing loss. I am also often left with dizziness/imbalance symptoms, rocking boat vertigo, roaring or very high pitched tinnitus, parathesia in my hands and feet, pressure headaches that start at the temples and migrate to the sinuses, pressure behind my eyes and occasional aura, hyperacusis, middle ear myoclonus (muscle fluttering), feelings of cold liquid deep in my ears, and on a few occasions, a fuzzy lightheaded feeling that makes me feel I am going to pass out.
Many of these symptoms resolve, but some, like the vertigo and ear fullness, often stay around long term and present in daily episodes.
Do these sound like familiar symptoms to anyone who has (or has had) a PLF? Please do let me know of any similar experiences! Am on the verge of needing hearing aids, so I am trying to get to the root of the problem as soon as possible.
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So I have had an issue with fissures in the past, due to being on pain meds for pancreatitis for months and cooccurrent constipation. I have already had one surgery to heal the fissure, and it seemed to work. So when I started have that same burning pain when I had a BM I assumed that was what it was. I became really used to it, and it went on for a LONG time. Flash forward to now. I noticed a couple weeks back what looked like pus on my toilet paper when I wiped after urinating, and was freaked out. I pushed on the area near my anus and more pus came out. I assumed my fissure got infected somehow and left it alone. It happened again, this time I was home so I grabbed a hand mirror and looked down there. I saw a bloody spot that was leaking blood slowly about 1 inch from my anus, and I freaked out. I had NO idea what it was, so I googled it and looks like it may be a fistula. It seems to "close up" and go away for a while, then I can smell something and when I go the bathroom I am leaking a little bit of blood/pus from the hole. Seems to happen randomly, its opening doesn't seem to have any correlation with when I have a BM and BM's aren't bloody typically. I have been using anti bacterial soap down there frequently now and I can feel what feels like a ridge under the skin running from the hole to my anus if that makes any sense?
I am completely embarrassed. I am 28 years old and a female, someone who doesn't even leave the house without makeup and this situation is so bad. It smells, I feel like I smell 24/7 (nobody has mentioned it but I feel like I do) and I am almost too embarrassed to go to the doctor. Doesn't help that I am overweight, and though I am meticulously clean (I even use a bidet) I feel like somehow the doctor will judge me as a gross fat girl.
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Around ten years ago I was the victim of a violent crime in which the back of my head hit the cement hard enough to crack the base of my skull in which the doctors said I had brain fluid leaking and caused black eyes, and cause me to lose consciousness. At the time blood was leaking out of my left year. For months after the injury I was very dizzy, ears feel full,had terrible tinnitus and have lost hearing in my left ear only. Eventually the dizziness went away but not the hearing loss or tinnitus. Since the injury I will have times when I "trigger" these same symptoms I had directly after my head injury. If I for example run, jog, look up or down for long periods of times, cough hard, sneeze hard, or basically jar by body in any way. I've been to many doctors who have prescribed many medications mostly to treat migraines and have also been told that they believe it is migraines. Nothing has ever worked. Bed rest and keeping still seems to be the only thing that helps but can take anywhere from a day, to a month to be able to function without symptoms again. This is ruining my life and my career is suffering. I seem to forget things easy and have trouble focusing which was never a problem before my injury. I am ready to be over this and have my life back. Please, anyone with any suggestions or have had these symptoms please help me. Oh and I've also had a few MRIs over these 10 years to rule out brain injuries and Acoustic Neuroma which all came back negative. There are more symptoms not as consistent but these are the usual when I have an "episode.
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I am diagnosed Meniere's but suspecting that I may have Perilymph Fistula....very similar symptoms to Meniere's but cause by trauma-induced leakage of the inner ear.
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I was diagnosed with herpes when I was 19 years old. Fast-forward 35 years... I am experiencing my second recurrence. How common is this? Has this happened to anyone out there?
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Two days ago my CA125 marker went from 14 at my last two month check up to 68.5. My dr says this is a significant rise in tumor marker. I have been in remission for 4 and a half months. Where does ovarian cancer spread to and how? Initially I had 7 hour surgery and they said they got all the cancer. I had 6 months of chemo and I feel fine. I don't understand and am scared.
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I'm a 26yo uncircumcised male. I've noticed a couple of times I have some red spots in my glans and the inside of the foreskin. This are not painful and they disappear quickly (a night, a day or so) and I've had a few recurrences. I notice sometimes white mucus, which it think it's smegma.
Apparently I got a negative test a few weeks ago, which the laboratory told me it was normal to get 0.00. However this was done before 8 weeks of my last contact.
Questions are:
1. Does this sound like Balanitis?
2. In which cases is balanitis a sign of herpes? Only during initial infection? Or recurrences too?
3. If it is caused by herpes, could it be painless? Could it be accompanied with smegma?
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I was interested to read other experiences. I am currently experiencing a recurrence of pityriasis rosea. I had the first occurrence about 9 or 10 years ago and my Dr too was not only surprised to see a rare disorder but to see it in someone at my age. I was 27 then. Even more surprised now at late 30's!
I too thought there was a patch of ringworm on my arm and recently had an awful cold and took 2 days off work (that's really rare for me as I'm a bit a workaholic). I didn't pay any attention to it at first, the spots that now cover my tummy, and a fear of having chicken pox actually made me look into what I had. When I read the symptons I realised that my symptoms are classic. I would have left it at that, because I'm not suffering at all - not even itchy spots, provided I don't scratch the herald patch - I don't even notice it. It was only when I read that only 2% recurs that I read on and found your experiences.
My herald patch and spots has been so typical in both cases that there is no doubt it is pityriasis rosea. My Dr the first time told me that it was most likely to be stress related.
My only curiosity this time is why now? It's made me consider taking a holiday in the sun (how often is the diagnosis to spend time in the sun?) to make sure I'm not opening myself up to to something more sinister - maybe this is nature's little warning that I'm over doing it.
Does anyone else think like that?
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2 years ago I tested positive to entamoeba histolytica (amebiasis) which I contracted while travelling in central america. I was originally prescribed metronidazole which eliminated the symptoms (I was getting swelling around the abdomen especially when eating sugary food). Around 9 months later the symptoms returned and the tests again showed positive for the above parasite. I was prescribed paromomycin that time and it worked. 12 months later the symptoms are back and after 2 tests for parasites the results are negative. I'm a bit confused as the symptoms are exactly like what I experienced when I tested positive previously. The Doctor (don't have a lot of faith in him) has prescribed a course of prednisolone and said if that doesn't work I will need to see a gastroenterologist for a colonoscopy but reading up on that I am not sure what that is supposed to reveal. Any thoughts?
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I'm now 38 and was diagnosed with achalasia in 1998. The condition stated in late 1997 and progressed very quickly. I was unable to eat any form of solid food and every meal had to be accompanied by buckets of water!
I had the myotomy and a fundoplication in Sept 1999.
However, the symptoms soon returned. They never got as bad as they were before the operation, but I think suffers of the condition become very adept at managing the condition.
I went through a series of dilations and other tests until, in 2005, my surgeon decided that another operation was the only hope. However, by this time, I had completely lost confidence in my surgeon and decided to live with the condition.
I have found that swallowing has continued to get worse over the years, but I manage it reasonably well by drinking lots of water with meals and avoiding problematic foods such as bread, pasta and fruit.
However, I suffer from dreadful substernal pain and have been admitted twice to A&E with a suspected heart attack. My use of painkillers is now at pretty serious levels so I am having the condition investigated again.
I guess that I knew this was inevitable, but I'm not looking forward to the barium swallows, endoscopy, manometry etc and I guess further surgery is unavoidable.
I utterly sympathise with those who have the condition. It is painful, restricting and embarrassing - you only have to regurgitate an oesophagus full of chewed food over a plate to realise what a bummer of a condition this is. It may not be life threatening, but it is certainly not fun!
I wish everyone with the condition every best wish in managing their condition.
PS - I really struggle with my weight and am now 5 stone overweight which must be a record for achalasia!!! Would love to hear from anyone in a similar position.
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I am 21 now, I had gotten shingles when I was 20. I only had it for a week luckily but, it was on my face...around my left eye and cheek area. While I had it, I had a lymph node swollen behind my ear that was pretty large also a couple lymph nodes on my head that were swollen as well. Both with piercing, constant pain. Then with the Shingles, the marks on my face and near my eye also hurt BAD. I got through all of that, no scarring.VERY lucky on that one. But now about 8 months later I have the same lymph node behind my ear swollen, my cheek actually filled up with fluid one day and when I opened my mouth something popped, all the fluid was released and the trash can became my best friend that night. NASTY. I thought it may have been a abscessed tooth causing the swelling and fluid build up, but after the fluid left my body my tooth stopped hurting. Now I'm just kinda lost and looking for some help on what may be going on.
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What can cause a fistula between the urethra and anus
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I have had a rectal fistula diagnosed via colonoscopy. I have zero problems with it and would not have known I had it. From the operative report:
"midline anal fistula which was superficial with minimal amount of muscle involved within the fistula".
The surgeon said it should be fixed.
Why can't I just leave it alone? Do these ever go away on their own?
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Now 22 , at the age of 13 , i started to have urination difficulties , standing in front of the toilet for about an hour , feeling the urge to urinate even though i know at the same time that my bladder is almost empty and finally a drop or two come , it continued for about a year then it was gone , for the last three years i have been having the habit of excessive masturbation ( sometimes 4 times per day ) , most of the time i go directly into sleep after masturbation , and as result the usual need to urinate after masturbation is suppressed and the urine is retained till i woke whereas i feel its reflux in the ureter , during this period whenever i go to sleep with full bladder ( regardless after masturbation or not ) , the urge to empty my bladder never woke me up , but what came up recently that i started to drink half liter of beer before i go into sleep directly every night for the last 3 days , yesterday i felt my prostate hard as rock , this sensation is mild so far , it is expressed more when i sit on something hard or try to urinate , now today this morning when masturbated after 2 days of cutting masturbation off , this mild sensation became to increase , then afterward masturbation when i try empty my bladder i felt more pain and couldn't pass urine , when i tried about 2 hours later , i managed to do it hardly after i tried to strain my bladder , whereas during these 2 hours i felt urine retention but with much less of the natural urge which drive you to the bathroom but i still feel the pain of reflux at up the ureters , the one thing which is so clear , that my pain is expressed from the prostate as hardening or feeling it like a rock , with mild sensation of burning . Also i think it is important to mention that at the age of 15 i got " pilonidal sinus " and underwent surgery to remove it but , i stopped checking it for the last 5 years and i have been feeling it pain coming back for about a year or more , but i ignored it , whereas i am referring that i may have a case of prostatitis with infection originated from the fistula , i also doubt it may be prostate cancer , even i know the chances of having it at such age is almost nil , this is why i am thinking to take the test of " PSA "
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I had a high transsphincteric fistula (multiple abscesses). CRS placed a cutting seton with fistulotomy in July. CRS told me that the seton would be in prob 4-6 weeks. It is now 8 weeks later, new CRS (first one moved), told me that he doesn't use these much as they are not tolerated well and that he thinks he will have to go back in and tighten it as it is not advancing. He says this is/can be a long process. Now I am to go back in several weeks to finalize new plan. Problem is, after surgery, I had Augmentin. The fistula track was not draining like it was supposed to and I got another abscess... after the fistulotomy and seton placement. CRS gave me Augmentin which I'm not sure really helped. So, I got a total body rash from the augmentin. I lasted 5 weeks before I was so miserable that I finally took oral steroids from Dermatologist with CRS approval. After I did two weeks of steroids, which helped tremendously, the rash came right back. Derm subsequently gave me a new prescription for prednisone (for one month taper!) and told me that it is a rebound rash after I stopped steroids. CRS says he won't do next surgery until I am off of prednisone for several weeks. Do I take the prednisone? or try to power thru the rash and not tear off my skin? How long will this next seton take to cut thru? wonder if it will get "stuck" midway too? More tightening procedures? Oh.. what to do?
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