Still waiting!

[GingerLox]

Dear Ed~

I am still waiting on the doctor's call.........I am still not worried though as this doctor is very concerned. He has alot of juggling to do to make this all come together.

I read your post on Jim's update and I must concur that it seems the more fluid there is the more it runs right through the eustachian tube. I feel the fluid drain especially overnight, then to build again during the day. The days that I do not drain as well I get a lot of discomfort in my head/scalp, with fluid bumps that form on the scalp above my ears. Then when I lie down with my left side especially, I get relief as it drains.

My ear leaking has become progressively worse over the last couple of years. It is much worse now than when I went to Mayo, 2 years ago. The fluid is so bad now that I KNOW that it is flowing/collecting down the tissue in my neck and down into my chest in between the tissue and the skin. I am convinced that it finds its way through the pathway of the carotid artery. It is very uncomfortable especially in the mornings when I have inadvertantly slept all night on my worst leaking side. I think it disipates as the day goes on or I sweat it out. It is the oddest thing ever! I worry now more about getting an infection in the fluid that drains into my tissue and body than meningitis at this point!

Have you ever tried to record the fluid dripping? It really works amazingly! I press the recorder between my ear and the pillow........and whalaa!

I promise to keep you posted as I know more. I KNOW how it is important to feel as though someone can relate to your situation. Please keep me posted on your progress as well! I always check back to see how everyone is doing!

~Ginger

[jimc]

Ginger, I hope you don't mind me asking a few questions about your experience. Who did you see at Mayo? It appears to me that Dr. Bahram Mokri at Mayo publishes more papers on CSF leaks than any other doctor, so I'm considering trying to see him. Obviously, it's a hassle to have to travel halfway across the country to see a doctor, so I'm interested in your experience there. Did they talk about any potential treatments that your local doctors weren't aware of? Were they able to diagnose your condition more completely and/or explain it better than your local doctors at the time? Thanks.

Also, I have concerns similar to yours about what the leak is doing to the rest of my body. My leak is on the left, and my left side, down to my waist and including my left arm, is always slightly tender. I've also have pangs and twinges in my chest, so yesterday, I had a cardiac stress test, even though I'm only 43. I passed with flying colors, and so of course asked the cardiologist what might be causing the twinges. He, like many of the doctors I've dealt with over the last 2 years, seemed completely unwilling to use his brain. "I dunno; they're not caused by your heart," is all he said before he walked away.

Jim

[Edward]

Hi Ginger,

Thanks for posting an update. I was wondering if you had your test yet. Let us know as soon as you do.

Yes, you are describing exactly what happens to me - at least as far as the fluid seeming to escape during the night and then gradually building up throughout the next day.

Since my leak is only through my ears (at least as far as I know) I cannot relate to your other symptoms. I am a little unsure of this but I would not think you would have too much of a threat of infection from leaks that just enter your flesh somewhere. I would think the CSF would be sterile so why should it cause an infection? (Oh! Unless you mean those areas where it pools up and does not drain. Okay, I could see your concern there. But any infection outside of the brain is not nearly as concerning as meningitis.)

No, I never would have thought to try to record it but that may have worked once or twice when it was really flowing.

So you say the leak into your ears is worse but then you say it is draining down areas other than your eustachian tube? If you have a leak into your ear wouldn't it have to go down the eustachian tube? Just wondering.

One other question. Have you actually been diagnosed with a leak? Or are you sort of in limbo-land like me?

Always good talking with you....Ed.:)

[GingerLox]

Dear Jim and Ed~

Jim............to answer your questions, and of course I do not mind at all..........I saw Dr. Mokri at Mayo. I was very disappointed with my visit. He is no doubt a fabulously smart man, and quite kind at that, but once I described my ear symptoms he scheduled me with an ENT, Dr. Moore, who treated me as if I was insane. He told me that there was no way for me to know if I had fluid in my ears unless I had a perforated eardrum. Since he saw no perforation and I had no history of surgery that would have caused such a leak, he said it was impossible. You, on the other hand, have had a recorded injury and previous surgery. Fortunately, or unfortunately, I also have the nose fluid like yourself. Therefore, they concentrated on that aspect of my leak. Dr. Mokri did the flourescein test and found a slight positive reading for csf at the cribiform plate. The key word being slight, he said it was not enough information to warrant going in to try to find the leak. In retrospect, I am sooooooo glad they didn't. I'm afraid they would have not had enough information and might have come up empty handed. All in good time.........I say! The neurosurgeon, Dr. Adtkinson, was very kind and told me all the meinigitis signs to stay aware of and at the first sign to get to the hospital. And if that were to happen, once recovered, it would be enough for Mayo to proceed with further studies.

Again, it is my belief that if they can find the source to the ear leak, this will be the site of the hole, which I am sure is behind the sinuses. They kept concentrating on the front sinuses and not the sphenoid or skull base area! The fluid that comes out of my nose is no doubt from the reservoir effect, not as a direct source.

As for the body symptoms.............what you just went through is exactly what happened to me. Although my symptoms started in my neck and my left breast. Last year it had all become so alarmingly obvious that something was going on, as the symptoms were getting worse. My left breast swelled up and was painful, so a mammogram was done. It showed nothing. I went to the cardio because I was having pain and pressure down my neck following the carotid artery. And I was getting a lot of swelling and pressure feeling in the area of my pacemaker and left chest area. They did a carotid doppler scan and echocardio and everything checked out okay. I have had many weird symptoms into the upper part of my arm and in my shoulder blades. I have felt these same sensations as far down as the middle of my back and chest. Once the tests were negative, I relaxed a bit and started with my own experimenting with sleeping positions to see if the leak was somehow finding its way into the lower tissues. I KNOW no matter what they say now that it is directly related to the leak. If I lay too long on my left side and the ears fill up, excess fluid is finding its way down my neck tissue. I can feel the sensation of it creeping down behind the ear and into the neck. I think the fluid's salt burns the tissue as it seeps down, causing the tissue discomfort. And I think it pools in areas and sits there causing the pressure. The most discomfort now is in the shoulder blade..........it's burning pressure in there every day. None of it is unbearable...........just very obvious!

and Ed.........I'm very curious to know if you have ever had chronic stuffiness or any other symptom in your sinuses, or if your sinuses are ever wet like a chronic cold. For many years prior to the actual diagnosis of rhinorrhea, I had been treated with antihistamines and such. I wasn't even aware that it was related to the ear symptoms until it became enough to flow out of my nose in larger quantities. The antihistamines had no affect but I kept taking them because it seemed to make sense at the time. I had always thought it was a Lupus thing.

As for the actual diagnosis..........I have found that most doctors will not be definitive about actually saying that you absolutely have a leak. I believe one reason for this is because it is a very illusive diagnosis, and also because as soon as they admit it out loud, they are probably obliged to fix it immediately, and we all know that it is not that simple. I think that a "suspected leak" is the most definitive diagnosis that I have received or "everything points to a leak". I believe once they find, and fix the tear that only then will they be able to say with 100% assurance. I hope that makes sense. It took a few doctors to get them to admit to that much!

(As far as the fluid not just staying in the eustachian tube once in the ear) I BELIEVE that in my situation, for some unknown or unexplainable reason that the csf has found an additional route in the area that outlets the ear that allows it to leak down into the tissue area of my neck. I honestly believe it to be the canal that holds the carotid artery. That's what makes the most sense to me. That canal area is located right next to the access to the inner ear in the skull base. My doctor has never been able to explain this sensation phenomenon and I don't push for answers on that. He is on board with finding answers for the leak, I don't want to lose him over this additional information. Remember I am the one that learned not to give my doctors too much information at once. He can't explain it so I dropped it from our conversation. I am just comforted in the knowledge that I do not have some sort of additional heart condition that could warrant these type of symptoms.

Again, my symptoms are much worse now than when I visited Mayo, so if I had seen them at this juncture in my leak process I may have had a different response. But that is how it went for me. Jim..........you might try googling Mokri to see if he has any further studies regarding otorrhea. Otorrhea just didn't seem to be his calling card at that time. BTW.........I am 44 years old. We're not old enough for all this are we? But how old would one need to be.........120? LOL

God Bless and stay diligent!
GingerLox

[Edward]

Hi Ginger,

The only nasal/sinus symptom I have had previously is some rhinitis that unfortunately causes a watery discharge upon eating or exposure to cold. This discharge sort of confuses the occassional discharge I have had since my leak developed but I can tell the difference. When I am inside and not eating anything my rhinitis never acts up so the first time after my accident that I bent forwards and had a drip come down my nose I KNEW something was up! Otherwise, the only big sinus problem was the sinus infection I just had a few weeks ago and I am wondering if somehow that could be related to the extra fluid dripping down from my ears due to my leak.

Yes, what you are saying about getting a formal diagnosis makes perfect sense now that you explained it so well.

So, it seems that you have more than one route of "escape" for CSF. But do your ears feel stuffy or wet commonly?

I am in sort of a hurry right now if it seems I am being sort of brief. I hope you don't mind me asking you so many questions all the time (you too Jim). I hope I don't seem like I am "grilling" you guys but it really really really helps to be able to talk to others in a similar position. Plus, I am sort of a detail-oriented person so I am always seeking to understand the minute details of things. Unfortunately though many things cannot be explained.:confused:

I've got to run. By the way, I am in my mid-40's too so we are in good company here!

-Ed.

[GingerLox]

Dear Ed~

Absolutely ask away..........I am so happy to share what I might know that might help someone else. I get a lot of good out of being able to talk with all of you also. I'm a "like-to-know" type of person also. I do not feel grilled, nor baked or fried! LOL!!!!!

I have fluid in my ears all the time. It is wet feeling always, and always full. Before the fluid really moved through as it does now (it used to build up before it leaked down) my husband would tell me that my ear(s) and head smelled like mildew. Right after washing my hair even! I was afraid that my bone/tissue/ear was rotting inside. Now that I have a higher volume flow and the fluid is not just sitting there in the ear tissue, the odor has left. In years past I spoke with another woman, with whom I lost touch, that had the same problem. It's not noticeable to others, just those that are very close! Thank goodness...LOL!

It would be interesting to pay close attention to your nose secretion. I walked around with a handkerchief for years never putting 2 and 2 together regarding my leak. I didn't even think the 2 went together until they started becoming concerned at not being able to control the secretion. In retrospect, it all makes sense. For awhile, before the nose drip actually started to manifest itself as a full blown fluid draining, I found that I had what was like (excuse the description) small, dried, hard pieces of elmer's glue inside the nostrils. As if it sat there long enough to evaporate but left behind the glucose or protein in this form. Now that there is enough fluid to actually drip out many times a day, I no longer find this residue. I hope this is not TMI (too much information!).

I am forming a visual image of the person that I am describing in the past 2 paragraphs, and it sounds like it is a wonder that I have a husband or friends.

Talk to you soon!

~GingerLox

[Edward]

Ginger,

I appreciate knowing more about your ear symptoms. It is always nice to know that someone else is actually experiencing the same thing! I get so tired of my ears feeling stuffy, wet, itchy, dripping, etc. I will occassionally get this little itch inside the ears from the fluid. Last night though it was more than a "little" itch. It was so bad I just about wanted to ram a pencil in my ear to relieve it.

The funny thing is the ENT has looked into my ears several times and performed his various tests and always says there is no fluid in there! It is such a joke. I am starting to have no faith in medicine. When you have fluid in your ear you KNOW it. When you have stuff dripping in your ears you KNOW it. When your ears are wet you KNOW it. I KNOW these things despite what their tests say. I know doctors are not Gods but sometimes they put too much faith in their tests. The ENT assistant even told me (in sort of an all-knowing manner) that lots of times they get people who claim there is fluid in their ears but the doctor finds that upon testing there is no fluid! Kind of scary but I have news for them - all those people may be right!

Okay, I better stop ranting and get back on track here. I appreciate what you are saying about the nose dripping but I had the rhinitis for years and it only happens in cold air or when I eat. All these new symptoms started immediately after my skull fracture and have continued to present.

Your symptoms are so unusual as far as how the fluid affects other parts of your body and how it drains. But it all makes sense when you think about it though because that fluid has to flow somewhere and affect something. And either it is going to accumulate or come out somewhere.

Well, I'd better run. It is always good talking to you. Have a nice weekend.

-Ed.:)

[GingerLox]

...............Heard from the doctor's office today.................he is enandated with work at the moment, but plans on scheduling my procedure as soon as things calm down a bit. I know there is a lot of coordinating that goes on with these procedures when it is not an everyday procedure for the doc.........so I am waiting. At least he is willing to push for answers, as so many other docs aren't! I am grateful that I have some hope that this will be solved! Once I get answers, I can't wait to share with you all!

~GingerLox

[Edward]

Hi Ginger,

Thanks for checking in. It has been so quiet here lately that I was starting to think you all went on vacation together and left me behind:D. I am so glad you have a doctor that is willing to help you. Yes, please let us know as soon as you know something.

-Ed.

[CSFChallenged]

Greetings to All,

I was wondering if any of you have had any experience with Dr. Timothy Hain in Chicago at the Chicago Hearing and Balance Center. His web site is http://www.dizziness-and-balance.com/cdb/policies.html and he reportedly has experience with patients that have complicated diagnoses. I found his web site years ago and had considered seeing him when my ear symptoms were at their worst. I have a spontaneous spinal leak(more like 12 leaks) diagnosed in May 2002 and have been on bed rest ever since. I was shocked to see that his web site actually mentions CSF leaks and the hearing symptoms associated with them. The first two ENTs I saw blew me off when I presented years ago with hearing loss, aural fullness, headache etc. despite having a very significant 2 week change in my hearing (sensorineural loss bilaterally). I still have pain, fullness tinnitis etc, but no dripping sensation or sounds. My newest symptom has been 1-3 hr bouts of vertigo.
Just thought I'd mention him since he seems to be one of the few docs that acknowledges CSF leaks and isn't afraid to talk about them.
CSFChallenged

[Edward]

Hello CSFChallenged,

So, do you think that you have/had a CSF leak into your ears? (There are three of us here that I know of who have suspected CSF leaks into the ears so I am just trying to determine if you are now part of our little "Ear Club" also.)

-Ed.

[CSFChallenged]

Edward,

No, I do not have a cranial leak. Mayo clinic told me that I have 12 spinal leaks. I was diagnosed in May 2002. However, my ear symptoms began before the headache and persist to this day. I have been told it was due to the brain sag and tension on my cranial nerves. I am also told I have permanent sensorineural hearing loss due to my leak. My ears get progressively worse when I am standing and better (although not completely) when I am lying down. They always feel as if I am on a plane and I can't pop them, or like I'm underwater. On bad leak days I have terrible pressure, fullness and pain deep in my ears along with the head pain. I had 3 days of tinnitis in the beginning, but none now. I first sought treatment with an ENT because I thought I had some terrible ear infection or sinusitis. They pretty much blew me off until an MRI showed significant meningeal enhancement and voila the testing and blood patches began. At one time my ears hurt so badly that I had considered seeing Dr. Hain to possibly get some relief. He describes the mechanism for ear involvement in CSF leaks differently than just resulting from traction on the cranial nerves. It's also interesting that people with increased intracranial pressure get ear symptoms too. Bizarre!

[Edward]

Thanks CSFC,

I do not know much about spinal leaks so I found your explanation interesting. Sorry you have to deal with so many leaks and all the symptoms that go along with that!:(

Take care....Ed.