A LITTLE BIT OF BACKGROUND
For years, I found myself with a CONSTANT runny nose... a clear, watery drip. Sometimes a lot, sometimes a little. Sometimes only seconds between "drips" and sometimes months. I had severe headaches (and I had never ever suffered from headaches before) and I was getting little sleep due to the "drip" dripping down my throat at night and making me cough. I was also having noticeable trouble with my sense of smell. I was unable to smell the oil from my furnace or even smoke.
After several trips to the family doctor's office, I received a diagnosis of "Chronic Sinusitis," and the usual battery of medications. I was getting real tired of the whole "see the doctor - get a prescription" thing. Nothing seemed to help.
What bothered me most was that my sinuses would be free of congestion, but occasionally when I'd tilt my head a certain way, bend over, or just "out of the blue" - I'd get a few drops of that clear fluid out of my nose. Sometimes the right side, sometimes the left side. Plus, this fluid was ALWAYS colorless, with the consistency of water. Always.
THE FIRST OF MANY STEPS
So... In Summer 1997, I went to a local "Otolaryngologist" which is basically an Ear, Nose and Throat doctor. I wanted to see what was going on with this nose of mine.
This doc briefly mentioned and described a possible CSF leak...
CSF is Cerebral Spinal Fluid. In a nutshell, the description offered to me was that there's a thing in your head called a Cribraform Plate. The Cribraform Plate separates your brain cavity from your sinuses. The nerves that control your sense of smell run thru this plate. Occasionally, it can get cracked which causes Cerebral Spinal Fluid (CSF) to leak into the sinus cavity and out of your nose.
"How does it happen?" I asked. Frequently, it occurs with a head injury - an opened OR closed head injury.
I recalled and related to the doc that I had wrecked my motorcycle in 1995 (I was employed as a Motorcycle Police Officer) then all this "dripping" started... That was the ONLY time I had ever been hit in the head. (Hard enough that my helmet sustained damage.) Things were beginning to add up.
"What if I don't get these tests and just live with this, like I already have for years?" I asked the doctor. The doc said all could be fine, or I could contract meningitis and might die. (Okay. That sounds bad.)
"So how does this CSF leak get fixed?" I was bluntly told that it may be able to be repaired thru my nose. If the leak was too large it might require a craniotomy. Brain surgery. On the way home, I experienced my very first panic attack. I sat in the parking lot of the local community college for hours - just numb. Then, I had to go home and tell my family.
The doctor wanted to start with other, less severe possible causes, such as my sinuses. ("CSF leak" wasn't brought up again until a few visits later.) I was sent to a Radiology Lab for a CT scan of my head and sinuses. The results came back saying that there was all kinds of "stuff" up in my sinuses. Where there was supposed to be air pockets, there weren't any. They were full of "stuff" and sinus "muck."
The CT was followed by a scope up my nose to take a look. I thought my brain was going to poke right out of the back of my head, because it seemed like the doctor was able to put 20 feet of this scope tube up my nose. I had expected it to hurt like hell, but it didn't. Prior to the scoping, my nose was sprayed with numbing solution that dripped down my nose into my throat and tasted absolutely horrible. That was the worst part of the procedure.
After being told I had a "deviated septum," it was suggested to me that a sinus surgery would clean out all that "stuff." I was so miserable. I had been told for years that it was "just my sinuses," and I really wanted it to be "just" that. (I mean, who WANTS a crack in their skull?) I was eager to agree and wanted that doctor to do whatever was necessary just so I could sleep & breathe again and stop dripping. Immediately, if possible. ("Good." I think. Sinuses vs. CSF leak. I'll take the sinusitis. Right?)
So, I consented to the surgery and had it performed shortly thereafter.
Fall 1997. Surgery Day arrived and I was off to the hospital. I went in with the understanding that this was to be an "outpatient" surgery, and it may or may not fix the problem. As I said before, I was so miserable for so long I just wanted relief. At just about any cost. (I later discovered that there would be lots to pay...)
What I did NOT expect was waking up and coming out of the anesthesia not being able to breathe thru my nose at all. (Enter the 2nd panic attack of my life.) What was not explained to me (and I wish it had been), was that when I came out of the anesthesia, my nose would be filled with a gauze packing which made breathing impossible. You're groggy to begin with, and then you're gasping for air... not a good feeling. Suffice it to say that the following week was the worst! Personally, I do not recommend sinus surgery for anyone. It's miserable and, guess what? The muck just comes back anyway!
Well, for a short time after surgery, everything was right with the world. I could breathe. So well in fact, that it seemed that the air I breathed completely filled my head.
Then it happened. I bent over to pick something up and... drip, drip, drip. "IT" had returned. So, back to the doctor for more tests. I was then told that we needed to do some specific tests to find out if what I had really was a "CSF Leak."
Needless to say, these scared the hell out of me. I agreed to get the "high resolution CT scan," but decided to hold off on the "lumbar puncture." The "lumbar" I could handle, but the "puncture" part of it just didn't sit well with me.
So, I was off for another CT scan. Nothing conclusive. But still, the clear watery drip from my nose continued. The doctor said I still needed this "lumbar puncture" test. When I asked if I could collect the fluid and send it out to be analyzed for this CSF stuff, I was told a large amount needed to be collected. A visit or two later, I was given a test tube and told to collect 3cc's early in the morning and have it back by the end of the day so it could be sent off for testing.
I finally decided it was time for a second opinion. When I confessed to my doc that I was getting a second opinion and asked for my records, I was told by the doctor that all doctors in the field of Otolaryngology were highly specialized and that they "all received the same schooling," etc. etc. etc. Time to get that second opinion right away! (By the way, they do NOT all get the "same schooling.") When I got my records, the initial pre-surgery CT scan was missing! I was told by the doctor's office that it had been "misplaced." Hmmm...
So, with what was left of my medical records in hand, I was off for a second opinion. The doctor I met was nothing short of incredible.
A DIRECT LINK TO THE MAN UPSTAIRS
Every doctor I see from now on will forever be compared to the man I met for my second medical opinion. I honestly believe he has a direct link to the "man upstairs." His bedside manner put me immediately at ease. I was floored with his knowledge of the subject, and I immediately knew that this guy knew exactly what he was talking about.
In order to give me a fair impartial opinion, the doctor told me that he did NOT want to see my records or hear anything Doc Number One had said. He asked me to be quiet and only answer his questions. He wanted to make an initial diagnosis before hearing what Doctor One had to say. Sounded good to me.
After several minutes of answering his questions and a thorough nose scope, he said I needed to undergo testing for a CSF Leak. He explained all the variables involved with this. But this time it was a lot more bearable. I guess that this was due to his bedside manner. Unfortunately, his schedule at the time was more than he could handle. He regrettably had to refer me to another doctor. But, being referred by Doctor Two, I trusted that Doctor Three was worth his mettle. (Not to mention, Doc Two & Three were both from separate but equally reputable hospitals!)
THIRD MEDICAL OPINION
So, on a Monday, I was off to see Doctor Three, for my third opinion. On the first visit, appointments were made for an MRI that week on Thursday. I also made an appointment for that dreaded "lumbar puncture." Damn.
Prior to leaving the office, I was given a test tube to fill with the fluid that was dripping out of my nose.
"How soon do you need it?" I asked. "Bring it with you Thursday," Doctor Three replied. I can't explain it, but per Doc One, the fluid needed to be tested immediately upon collection. Doc Three didn't find this necessary. I asked about this but, Doctor Three just said "bring it Thursday."
As to my sinus surgery... Both Doctors Two and Three said that Doctor One's technique was great. But, they both advised that they would have held off on the surgery due to my initial complaint of that clear, watery drip. The "terrain" was now altered.
Well, I had no idea what the heck an MRI was. My wife and I were driving up to the hospital (did I mention all these places were two hours away?) and she says, "Well, I think they put you in a big tube..."
"No, they don't." I countered, "It's just like the Cat Scan, a big 'donut thing' you go thru." (I hoped.)
Well, I've never been claustrophobic in my life. But, being a large frame guy it really spooked me when I laid down and the technician strapped a catcher's mask-type thing over my face. I was then shot into that tube... head first. The tube was so small in diameter that I couldn't lay flat. My shoulders scrunched up to conform with the shape of the tube.
I lasted all of about two minutes. After some mild sedation, I was ready to go back in. I almost completed the entire test... almost.
Well, Doctor Three said now I needed to come back for the dreaded "LUMBAR PUNCTURE."
THE LUMBAR PUNCTURE
So what is this Lumbar Puncture after all? Basically they put small cotton plugs up your nose called "pledgets." Then, they inject radioactive dye in the base of your spine - yep, a spinal tap. After that, several hours pass and you have to get Nuclear Imaging X-rays.
The theory to this test is, the radioactive fluid travels up your spine, into your brain cavity, and if you have a crack, it leaks either into your ears, nose, throat, and/or stomach. (Of course, having to pass through your sinus cavity first to get to these other body parts.) If this is the case, the fluid will collect on the pledgets, which are stuck up your nose.
After collection, they test these pledgets for radioactivity. If there's radioactivity, then there's a leak. Depending on where the pledget is placed in your sinuses, and the amount of radioactivity on the pledget, it helps the doctors determine the exact location of your CSF leak.
So, the appointment was made and I was off - again - to the hospital at o'dark thirty in the morning. (Oh, by the way, Doc Three never showed up the entire day. Not once throughout all my testing... I saw 3 different docs throughout the day! Who is keeping track of how I'm doing anyway???)
After a long uncomfortable time inserting about eight pledgets in various points in my nose, I was off for the "puncture" part of the Lumbar Puncture test. I don't know what it was, maybe the loss of "control" and the difficulty breathing with cotton in my nose and sinuses, but I was again spooked with another anxiety attack like I had at the MRI (made better by a sedative - God bless 'em!). Although not painful, it was exceedingly uncomfortable having those pledgets in my nose. It reminded me of waking up from that earlier sinus surgery with that packing up my nose. Hard to breathe.
Well, time for the puncture. Not too bad, well, until they hit a nerve and my leg started flopping around. After the test, I was told I needed to lay flat on my back for an hour. This made it even harder to breathe. After another anxiety attack and another sedative, I was back in shape.
I had to wait all day so I could get the Nuclear X-rays every couple of hours. All day I had to keep wiping my nose with tissues. I guessed that my cerebral spinal fluid cavity was extra full from the injection or that maybe the cotton pledgets in my nose triggered some mucous gland. I don't know. Either way, I was wiping my nose every 30 seconds it seemed.
Well, I had the Nuclear x-rays of the left, front, right and rear of my head, and also my stomach. During the x-ray of my stomach, they were checking to see if any of the radioactive dye had come into my sinuses, down my throat and into my stomach.
The technicians positioned and repositioned the machine and couldn't quite get it placed correctly. I really don't remember the exact sequence of events, but they had me take off my belt, move my gown up, then they finally noticed the tissues. Well, I had laid down and absent-mindedly put the tissues (that I'd been wiping my nose with) next to my stomach on the gurney. Apparently they were getting a "hot spot" or "radioactive" spot on the x-ray. I heard one say "oh, it's the tissues." My wife was in the room and could see the computer screens. She could see the "hot spots" where the tissues were AND where my spinal cord, brain, sinuses, nose and throat were. She said between that and the technicians giving her sideways glances, she had a bad feeling.
I said "I guess I've got a leak" (because it seemed logical to me).
They had the Nuclear Medicine Doctor look at the x-rays and told him about the tissues. He looked at me and said, "I'm sorry. I guess you know now that you have a leak."
They then sent me to another doctor to remove my pledgets so they could be tested. Then, I went home and waited for the official results to come back. Doctor Three called the next day.
THE FIRST RESULTS
Doc Three told me the Cerebral Spinal Fluid I had collected for him AND the cotton pledgets from the lumbar puncture were negative.
Wait a minute...
I was confused. I told him about the Nuclear Medicine Doctor's reaction during the x-rays. I also told him about the tissues containing the radioactive dye and showing up on the x-ray. He didn't have an answer for me and just said, "It's negative." He said the fluid analysis and the pledgets were the most conclusive battery of tests available. He told me the pledgets were placed in every possible place in my nose and sinuses.
Well, not too long after that call, I was mailed a copy of the written test results. Guess what?? The WRITTEN test results showed a POSITIVE COUNT from the pledget test! I called Doc Three back and asked him about this. He said the positive results were "just trace" and so minor that it was considered "negative." Huh?
Nevermind. It didn't matter because my clear, watery drip continued and even got progressively worse - in amount and frequency. I was dripping every time I bent over and my headaches were increasing in intensity and frequency. So, even with the "negative" test results, I was still worried. Something was telling me this "diagnosis" was wrong. So, with the new test results in hand, I went back to see that really cool Doc Two, whom I really trusted.
Doc Two was shocked about the so-called "negative" results. He had me perform a physical maneuver that involved bending over. This maneuver had a name but I can't remember it. Anyway, that clear fluid pored out of my nose. He immediately made me sit up and said, "I am positive you have a CSF leak." Doc Two apologized and said that he was still so overloaded with current patients that he couldn't treat me himself and on top of it his wife was terminally ill. He apologized that he would have to refer me to yet another doctor.
So, I'm now into October 1998. Seeing my FOURTH doctor at another "world renowned" hospital. I was asked to bring ALL of my x-rays and reports, which I did. (Except for that very first x-ray that Doc One misplaced, of course.)
After reviewing my records and witnessing me leak into my cupped hand just by bending forward a little, he recommended that I have another lumbar puncture done. He said that with the description of my intermittent leak, that it wasn't unusual for one test to be negative and the next to be positive. He told me that it would also be extremely helpful if I could find my pre-sinus operation CT scan (misplaced by Doc One, if you recall).
Well, I wasn't thrilled about another lumbar puncture, but you do what you have to. So, I called Doc One's hospital and unbelievably they had located my original films!! So, I got those and sent them immediately to Doc Four. So, now Doc Four had everything - ALL of my films and reports. EVERYTHING.
GLUTTON FOR PUNISHMENT
I made my appointment for the second lumbar puncture with Doc Four. I put in for leave at work and got mentally ready to go through this again. It was the day before testing and I hadn't heard from Doc Four or the hospital with last minute instructions or confirmation. SO - I call them.
What I find out puts me into the fifth panic attack of my life! They tell me that the test is a 3-day procedure in which I will receive a lumbar puncture each day. Wait - I just had this done at another world-renowned hospital and it was only ONE day... With the lack of communication and then the assurances that this test was going to be "just like the other one you had," there was nothing for me to do but cancel the test. Not to mention, I'd only been approved for 1 day of leave from work. What in the world is going on?
ARE YOU THERE GOD? IT'S ME, GREG
We're into March of 1999 now. I made an appointment to go back and see Doc Two again and explain all that has happened. True to form, he was sincerely empathetic. He checked my nose and everything out. He tells me that it is VERY important that I receive 3 vaccines and have them renewed without fail - a flu, a pneumonia and meningitis vaccine. Additionally, he says I am never to encourage my leak (like showing it to family members) because this is dangerous and could open it wider. He says I need to start noting it down every time I leak (the consistency, amount, time of day, what I was doing, etc). Doc Two also says that, although rare, it is possible for a small (or intermittent) leak to heal on its own. But, odds are, a surgery is in my future. He also tells me that these other doctors have not been collecting my CSF correctly.
The CSF contains sugars or some other stuff that get eaten up by bacteria. He said it is very important that the sample is kept refrigerated and tested immediately (like within an hour if possible). He gave me a letter to keep with me at all times in case I am near my hospital and I leak, I can take the sample right in for testing in the collection tubes he gave me. In the meantime, Doc Two was going to do some checking on who next to send me to (since there was such a major conflict in procedure between the two "world-renowned" hospitals). I'm supposed to "maintain" for the time being and get those vaccines.
Well, Doc Two sent me a letter not too long after that. He also sent an article describing an "electronic nose" used for testing things like CSF. His letter seemed positive and excited for me because he found out this new device is in use at another "world-renowned" hospital in Pennsylvania. He tells me to make an appointment with this hospital to see DOCTOR NUMBER FIVE as soon as possible. I do this. I also call up Doc Four to retrieve all of my films and reports I left with him. Well, GUESS WHAT?? They've lost them. That's right. Every freaking report and film I had - LOST. Including that original pre-surgery scan. Great.
Luckily, I was able to retrieve some of my films from Doc Three's hospital... at a frightening cost, of course.
We are now into Spring of 2000. My wife and I make plans to see this doctor and spend the night in that city.
We are not impressed.
Compared to Doc Two, this Doc Five is a pompous jerk. He scopes my nose, etc. and tells me there is nothing wrong with me except allergies and severe sinusitis. Then, he asks where all the rest of my films are, especially the pre-surgery stuff. I tell him my story. Then, I bend over to see if I can leak in front of him, and of course, I don't leak! (You know how when your car isn't running right, but when you take your car to the mechanic it runs fine?) He just shrugs and tells me that he doesn't see how I have a CSF leak.
Ummm... okay. Great.
Well, I actually have to convince this jerk to let me continue trying to get my other films and to collect a sample of fluid for him. He agrees to see me in 2 months.
I diligently pursue for that entire 2 months to get my films. Finally, luck is on my side and Doc Four was able to find everything (even in the original envelope I brought them in). WHEW! Then, it just so happened that I leaked one day and I immediately got the fluid Fed-Exed to Pennsylvania & Doc Five in dry ice.
I return to PA to see Doc Five for my 2nd visit. He walks in and sarcastically comments on my "finding" my x-rays. I bite my tongue. He literally tosses them up onto the light board so nonchalantly that some of them fall onto the floor. He gives them a cursory 1/2 second glance, turns to me and says, "These show nothing." I asked him about the film showing the tissues at my side and the film showing the crack in my cribraform plate. He makes no comment about those but says instead that the sample of fluid I overnighted was not enough to test in the electronic nose.
I said, "So what is your diagnosis?" He said, "I can't say you don't have a leak, but I can't say you do." Okay, so what do I tell my employer, my attorney, my family? He says, "Well, you and your wife should stay vigilant for signs of meningitis. But you should return to work." I asked, "What if I get knocked in the head in a street fight? What if it splits me open more if I actually do have one?" His reply, "You could fall in the shower and hit your head." What?!? This guy obviously has no idea what police work may entail.
I mean this is true but, Doc Two was adamant that I should change my entire lifestyle - sell my motorcycle, quit working, etc, etc... AVOID putting myself at risk. And here is this Doc Five telling me there's nothing wrong with me - but if there were, he doesn't know for sure - don't worry my little head about it. Then he tells me I should still watch for signs of meningitis!!! Well, I don't know about you, but I'm erring on the side of caution when it comes to MY LIFE. Thanks but no thanks Doc Five... I'll keep looking until I find a doctor that can tell me for sure one way or another - do I have this CSF leak or not?
X= DOC1 + DOC2
Okay. Can you believe that this trauma and drama was enough to send me to a counselor? Seriously. I just couldn't take it anymore. Plus, I was having chest pains and panic attacks (the heart attack came in September 2004, and again in July of 2014 at ages 41 and 50). The counseling did seem to help though.
Also, I decided to contact Doc Two and tell him I just couldn't bear it anymore and I had to find someone to test me properly and get some results. He agreed and again apologized for not being able to take me on but he truly had his hands full with his wife and was even thinking of retiring. (After everything I had been through, I completely understood!) Doc Two wrote an extremely strongly worded letter for me to take to my attorney, my employer, and the next doc I saw. It left no doubt in anyone's mind that I had this leak and only needed a properly performed test to prove it.
So, I took my letter, my films, my reports, my wife, and what was left of my sanity back to Doc Number One (with my tail between my legs). I told her that she was right all along and that I just needed to have one stinking test that would show whether I had this leak or not. She agreed to take me back under her wing.
She immediately got me lined up with my local hospital to have another lumbar puncture, pledgets, and Nuclear Medicine Imaging. She placed the pledgets herself and labeled each one. If I recall correctly, I had the first pledgets in on day one, then another set for day two and three. Man, it all seems to run together after a while!
Finally, the third day rolled around. They took x-rays and then removed my second set of pledgets. The "normal fluid count" on a pledget is around 500. My counts were 1400 in my left nostril and 2500 in my right nostril.
Finally. The nuclear imaging doctor's attitude was just like the other one's at the other hospital "Yep. You've definitely got a CSF leak." It only took a little over 3 years to finally get it done right! Doc One said there is no medical doubt that I have one after seeing the counts, the crack in my cribraform on the x-ray, and watching me physically drip.
I know, I know. It was finally done right at my local hospital that I didn't trust in the first place, but I DO NOT regret getting a 2nd opinion. Doc Two was my sanity during this long process. I'll be ever thankful to him for being so good at what he did.
Well, as I said at the beginning of my story, this was a work-related injury. As such, it began the first steps of a very long road to gain disability retirement through my employer and recognition from Worker's Compensation that this was a work related injury. This, of course, is made twice as difficult because from outside appearances, people with a CSF Leak "look" fine. They're not on crutches, they're not in a wheelchair, from the outside, they look OK. The inside, is a whole different story. I just tell people I'm like a new car with a bad motor. Looks good on the outside, but won't run worth a damn.
As you can probably guess, I ended up in court. Seems that when one files for disability, you are "guilty until proven innocent." Nothing you say or do can satisfy the powers that be. So, I ended up getting a lawyer. Two, in fact - one to handle my Worker's Compensation issue and one to handle my disability retirement from the Sheriff's Office where I worked as a Deputy Sheriff.
In a nutshell, I filed for disability retirement in February of 2000. I was "fired" from my employer due to my medical condition in April of 2001. After an appeal to my employer's retirement system, I was finally granted disability retirement in January of 2002, a "quick" 23 months after I first filed.
However, issues with my retirement continued for years. Mainly due to the fact that I was "fired" in April 2001, then "retired" January 2002. That's right, I was retired from the job they fired me from! Six years later, they finally corrected this and revised my file to telling it like it is - retired due to a work related injury.
Worker's Comp? That started soon after my accident in 1995, and my case was reopened in 1998. In January 2003 I received a ruling recognizing my work related injury. The ruling did not recognize the extent of my injury and I appealed it. After all, how common is a Cerebral Spinal Fluid leak?
I was truly blessed to have the trial end in my favor. I am thankful that the jury recognized the extent of my injury. The settlement was just, but I'd give it all back in a New York Minute to still be able to work and not have this leak. I'll still have to have this thing repaired, but we're relieved to have the major court matters over and done with.
If you should end up in court, plan on having to spend money, lots of money, that you probably don't have. Beg, borrow, but don't steal. The wheels of justice turn slow...but they do turn! My last and final Worker's Comp case came to a close in 2010, just 12 short years after it started.
How am I medically? I still have my dripping. No worse. No better, but it's been picking up as of late. The doctors tell me I'm very lucky. Actually, Doc Two (the good doc) said I had "a guardian angel over me the size of a cathedral!"
I'm lucky because my leak is not very big and it's been intermittent for the past 20 years. Although, it has increased in the past year and hasn't sealed itself on its own, as was the initial hope.
But even if you have a leak and do have surgery to repair it, you're never "cured"... you're only "patched." Throughout your life there will be a chance that it could open up again and require many surgeries to try to fix it. Doc #2 likened it to patching a pool that is full of water... the patch is just not going to hold. (Due to the pressure, I think.)
I continue to get my vaccines every year and keep my family doctor abreast of everything. I also go every 6 months to check in with my Otolaryngologist. He says to just sit tight and keep hankies handy. And, one day, if I need the surgery, he'll send me to another "world renowned" hospital to have it done. I've recently moved and made an appointment to see a new Otolaryngologist about 40 miles from home. Hopefully he'll be just as good as my current one. If not, I'll make the 900 mile trip to see my current one. I like him that much.
So... the morals to the story?
- Wear your helmet if you ride a motorcycle (even though it won't necessarily protect you from closed head trauma, brain injuries, and CSF leaks) - it could at least save your face!
- Always get a second opinion... and 3rd, and 4th, and 5th - and 6th if you have to!
- Pay attention to those "red flags" that pop up. Follow your gut instinct.
- "World renowned" doesn't mean "infallible"
- NEVER give up... you will triumph in the end.
- Stay positive... see a counselor
- Be good to your loved ones... they will be your backbone and sanity through it all.