Aa
Hi QUIX can you offer me some advice, THANK YOU
i have been experinecing headaches for a couple of years they are twenty four hours a day they are always there. With the headachses I also have fluid draining into my ears, which than ring, become full, crackly and then after the draining relieves from my ears I feel my neck crackle. When the draining occurs I also feel the increase in headaches and my head takes on a wavy feeling. I have had MRI/ and lumbar puncture, told they were fine . one other symtpom I can say is that if my nose runs from lets say after eating soup or sneezing my nose will run heavliy and I can actually feel the fluid building up on the right side of the head than the draining takes place. I just had another CT scan of the sinuses 3/23/07 and was told that there was free form fluid, synchaie??? and mucosal thickening of all the sinsues, including problems with the sinus air cells. . Told this is nothing to worry about. I am so at a loss as what to do or who to even see, as I know my symptoms better than anyone and I can without a doubt descrbie them to a tee. I can only say that this started after a sinus infection that seemed never to clear up. One more thing, when I feel the release of fluid this pressure builds up on the right side of my head almost direclty in line with the right ear after the pressure builds up I feel a release of fluid which than drains. hope someone can offer advice...........thank you Can you tell me what is meant by Synechaie and free form fluid. I do feel the fluid draining so I am wondering if that is the fluid I feel. But, I am not sure what Synechaie is thank you. attached copy of cisternogram and mri. I was questioning these two spots if you can help. I currenlty have the report only for the CT Scan of Paranasal sinsuses not films. thank you again: the linkss are as follows.
cisternogram
http://community.webshots.com/photo/546590188/2874820810084724211YpsIGG
MRI
http://community.webshots.com/photo/546590188/2125892960084724211jZvXKU
thank you so much for your time and answers. I am going to look into a neurosurgeoun hopefully with my MRi/cisternograms someone will see something that an ENT didnt. Oh for the fluid as stange as it sounds 99 percent of the time its in my ears, but once in a while if I do a lot of bending up and down like heavy cleaning than the slightest bit comes out of my nose. This is what I tested with the glucose strip with. I wish I can catch more because there barely is anythiing left by the time I run to catch the fluid. It draains so quickly and I cant seem to catch it in time.
thanks....
thanks....
You certainly have some of the symptoms of intermittent intracranial hypotension as would happen with leaking of CSF. I have had a spinal headache and rank as the #10 in pain ranking of my life. When the pressure in the brain/spinal column falls because some of the fluid has leaked out it results in a headache and a dizzy, or "wavy" feeling. When you're upright, in general the pressure at the head is a little less than tha lower spine just because of gravity, and this is tolerated becasue it is the norm for everyone with normal flow of CSF.
If the pressure in the system drops suddenly, the pressure in the head will drop more when the person is upright. This will cause the headache and other symptoms and usually be at least improved by lying down.
Your time-course is also consistent with this process. You feel the fluid draining and then your headache develops/worsens (if I read one of your earlier posts right).
You actually tested the fluid!!? Where did it drain from? Testing for glucose is not a good way to check for CSF. I was out of date on that topic, too, though that is what I was taught a million years ago. It can be falsely positive, especially in the presence of blood, and falsely negative if the CSF glucose is low. If you can collect the fluid there is a "gold-standard" test for determining if it is, indeed, CSF. The test is for "beta-2 transferrin". This enzyme is present in CSF and in endolymph (the fluid in the inner ear), but not in nasal secretions or rears (which also drain through the nose).
I still think you need to see a neurosurgeon.
Anxiously awaiting your answers. Quix
If the pressure in the system drops suddenly, the pressure in the head will drop more when the person is upright. This will cause the headache and other symptoms and usually be at least improved by lying down.
Your time-course is also consistent with this process. You feel the fluid draining and then your headache develops/worsens (if I read one of your earlier posts right).
You actually tested the fluid!!? Where did it drain from? Testing for glucose is not a good way to check for CSF. I was out of date on that topic, too, though that is what I was taught a million years ago. It can be falsely positive, especially in the presence of blood, and falsely negative if the CSF glucose is low. If you can collect the fluid there is a "gold-standard" test for determining if it is, indeed, CSF. The test is for "beta-2 transferrin". This enzyme is present in CSF and in endolymph (the fluid in the inner ear), but not in nasal secretions or rears (which also drain through the nose).
I still think you need to see a neurosurgeon.
Anxiously awaiting your answers. Quix
I do notice that when I feel the pressure build up (right side) than I feel the release of fluid. after the release of fluid my headache gets worse. The only relief somewhat is when I lay down to rest or fall asleep. But if I am walking or moving my head around a lot like shopping, my head takes on a wavy feeling and the headache seems to increase slightly. Most times the headahce gets worse when more draining takes place, which is odd becasue its spordacilly and it really has no pattern, just happens throughout the day at different times. Oh one more thing if I do have a period where I dont feel the buildup of pressure etc... my headaches stay at the intensity they were. It actually is a period of relief when no draining is being felt. Sorry, this is the best way I can describe my symtoms. Thank you.
Is there a "positional" aspect to the headaaches once they develop? Does beinng upright for a long time make them worse or better. Do you need to assume any special position for them to improve?
no need for eating crow/or being sorry...... I thank you so much for your time and input that is what means a lot to me. It is odd though not to repeat myself but the fluid draining is so unmistakeable, I can actually feel it drain than fill into my ears. My headaches actually get worse when this happens and the only thing that calms it down somewhat is if I try and lie down to sleep it off. But the problem is always there. Oh the neck crackly thing, I liken it to the way the ears crackle when they feel full and with pressure and fluid. Thank you again, for all of your time and effort, its appreciated more than you know. wishing you well
Hi thanks again, can you offer me advice how I can word my symptoms to the doctors for my next appointment. Maybe that will help somewhat. It is definely fluid draining I actually feel the sensation than the ear/ears is filled up. If you can offer how I can best describe my symtoms it would be much appreciated. Oh a neurosurgen never looked at my films only ent doctors. What was strange to is that one doctor made me test the fluid with glucose test strips which showed postive for glucose but than I was told that was a waste of time. Take care
It sounds like you misunderstand my last post to you. I found info that supports your symptoms - as you report them. A CSF leak to either the sinus or the ear does a lot of explaining. An certainly someone else thought so or they would not have ordered a cisternagram. My post was to apologize for not realizing that I had glossed over not knowing what a cisteragram was.
My comments about your description were NOT to discount what you so clearly perceive, but to advise you that the particular way you phrase the description sounds odd. Now, this would be natural because you are having odd and unusual sensations. You feel fluid building up in the sinus area (could that also be reported at "a definite, maybe rapid, increase in pressure that you liken to fluid building up?" You feel and hear the sounds that suggest the ear filling up and then draining. The ear has far more sensory nerves and the report of fluid there is more likely to be accurate. The sinuses have far less sensory innervation and typically just pressure/pain.
I'm saying that someone may more likely to hear you out with an open mind if you don't report two sites of "definite" fluid draining.
I do think you need to take that cisternagram to a (2nd) neurosurgeon, as it is their field of expertise.
Quix
My comments about your description were NOT to discount what you so clearly perceive, but to advise you that the particular way you phrase the description sounds odd. Now, this would be natural because you are having odd and unusual sensations. You feel fluid building up in the sinus area (could that also be reported at "a definite, maybe rapid, increase in pressure that you liken to fluid building up?" You feel and hear the sounds that suggest the ear filling up and then draining. The ear has far more sensory nerves and the report of fluid there is more likely to be accurate. The sinuses have far less sensory innervation and typically just pressure/pain.
I'm saying that someone may more likely to hear you out with an open mind if you don't report two sites of "definite" fluid draining.
I do think you need to take that cisternagram to a (2nd) neurosurgeon, as it is their field of expertise.
Quix
Dear alchris, I have been guilty of the very thing I didn't want to happen. I really did read a great deal trying to get some insight intowhat you were complaining about. But I ignored something (unconsciouslessy). I didn't have a clue what a "cisternogram" was or what it was used for. I do now.
There is an "apparent" collection of CSF outside the normal flow area. It is on the right, but I have no landmarks to know what exactly where it is. The sinuses are are very close to midline and this suggests something more lateral such as the ear.
So your headaches have any positional effect. Are they worse when you have been up during the day and better after a rest lying down?
Very interestingly I did come across an article titled "Orthostatic headache syndrome with CSF leak secondary to bony pathology of the cervical spine"
I found the article on a Google search and the google list had these tantalizing words:
"nausea, left ear fullness, nasal
There is an "apparent" collection of CSF outside the normal flow area. It is on the right, but I have no landmarks to know what exactly where it is. The sinuses are are very close to midline and this suggests something more lateral such as the ear.
So your headaches have any positional effect. Are they worse when you have been up during the day and better after a rest lying down?
Very interestingly I did come across an article titled "Orthostatic headache syndrome with CSF leak secondary to bony pathology of the cervical spine"
I found the article on a Google search and the google list had these tantalizing words:
"nausea, left ear fullness, nasal
thank you for your time and help. The funny thing is I had a cisternogram, I attached a picture in my post. There is a spot on the right side that shows up and I questioned it to every doctor. iTs on the right side which is the side that bothers me but all I ever get is that I had to have an earring on. Thats whats frustrating I didnt where any jewerly and the odd conicncdence is it is on the right side. I have been told its the area of the ear the spot I questin but still am told its an earring. Just from how my head feels I have to believe its my answer but for some reason is being overlooked. thanks again.
Well, despite a lot of reading, I cannot come up with much in the way of help.
What do you take for headache pain and how often?
You have a lot of things that point to your sinuses as the source of your problems. The sinuses are air-filled pockets in the bones of the front of the skull and back between the eyes. During a real sinus infection one or more fills with fluid made up of nasal muscous and pus. The lining of the sinus, the mucosa, swells up. Symptoms can range from congestion, pain, redness and/or swelling over the area of the sinuses, fever, dizziness, eye pain, ear pain, sore throat, fatigue (from having an infection), nasty, purulent drainage from the nose, secondary ear infection, bad breath...and the list goes on. They can be nororiously difficult to treat. The general doctor has to guess at the orgasism causing the infection and treat with fairly high doses for several weeks. Because of this, broad-spectrum antibiotics are often used, and the bugs are often antibiotic-resistant.
Chronic, recurrent sinusitis is common and a real challenge to treat. Sometimes it requires surgery to allow for proper drainage and sometimes even that fails. On X-Ray sinusitis shows up as thickened sinus muscosa (lining). Often we see fluid levels. If the fluid is really liquid you see it pool with gravity (flows down). Thick pus doesn't pool as nicely. I think the report of freeform fluid is just that - thin fluid - that may or may not be be growing bacteria. The finding of synechiae just means that at one time the fluid was thick and rich with sticky mucous and protein. The sticky stuff "stuck together" forming bands or walls across the sinus cavities. And sometimes we can see the fluid within these little walled off areas.
It's not a serious finding and just means that you've had a doosey (official medical term) of a sinus infection.
The sinuses are built so that they drain excess fluid into the back of the nasal passage. Then you swallow it and people often report a sensation of swallowing gunk or feeling the presence of mucous in their throat. They are also often queasy. They do NOT drain directly into the ears. However, adjacent to some of the sinus openings in the back of the nasal paasage and at the top of the throat is the eustachian tube. This is a passage directly into the middle ear. This would be the only way that the fluid from a sinus could get into the ear. I've never heard of a fistula (passage) opening from a sinus directly into the ear. The middle ear's only way of draining is either out into the external canal through a hole in the ear drum, (in which case it would come out and run down your neck) or back out the eustachian tube into the throat.
So what you are describing has me stumped from an anatomy standpoint. And I have no clue what it means that you feel a crackly sensation in your neck. In your spine? or the muscles, or the throat?
Now here is the only catch. In my reading the other day on migraine I did come across a type of migraine that causes unusual sensations in the side of the face and the ear often with swelling of that side of the face. I wasn't feeling well and didn't bookmark it, or at least I can't find the reference again. Also all the sources state that sinus pain can trigger a migraine. Could some of your sensations be due to migraine aura and thus feel totally real, but be false sensations? You say the headache begins buiding about this time, and you feel weird "wavy."
Another, but probably unlikely thought. There are other mechanisms for fluid to get into either the sinus or the middle ear, but not both. It would be a leak of CSF (cerebral spinal fluid) because of a break in the bone or an abcess which ate through the bone from one of those areas. This is rather "out there" in likelihood. If you could present to the doc when the ear seems to be filling up they could sample some of the fluid, and test it for glucose and markers of CSF. It really would be best if they could capture some of this fluid and analyze it.
Okay - one more personal story. This only deals with a possibility for the middle ear filling with fluid - NOT the sinus. There is a problem called perilymph fistula - PLF. This is a leak of the fluid in the INNER ear (which flows around the hearing and balance organs) into the middle ear. It leaves the middle ear via the eustachian tube when it builds enough pressure, or you yawn (pop your ears) or swallow. I had a PLF on my L side in 2000. It usually results from some kind of trauma. The common types of trauma are pressure trauma (SCUBA divers, airplanes with lowered cabin pressure - mine), a blow to the ear, head trauma, severe straining or lifting, and others. Sometimes they don't know what caused it. Anyway I heard an almost constant "drip drip" and crackling when I swallowed or yawned. A PLF is almost invariably associated with dizziness/vertigo and it's usually severe. Is your "wavy" feeling a feeling of unsteadiness in space or dizziness? Do you fall?
Those are my ideas. Consider seeing an academic ENT specialist at a major university medical center for a thorough second opinion.
Again, another epic discourse. I wish I could have come up with something for you, rather than just an explanation of the anatomy of it all.
Good luck, Quix
What do you take for headache pain and how often?
You have a lot of things that point to your sinuses as the source of your problems. The sinuses are air-filled pockets in the bones of the front of the skull and back between the eyes. During a real sinus infection one or more fills with fluid made up of nasal muscous and pus. The lining of the sinus, the mucosa, swells up. Symptoms can range from congestion, pain, redness and/or swelling over the area of the sinuses, fever, dizziness, eye pain, ear pain, sore throat, fatigue (from having an infection), nasty, purulent drainage from the nose, secondary ear infection, bad breath...and the list goes on. They can be nororiously difficult to treat. The general doctor has to guess at the orgasism causing the infection and treat with fairly high doses for several weeks. Because of this, broad-spectrum antibiotics are often used, and the bugs are often antibiotic-resistant.
Chronic, recurrent sinusitis is common and a real challenge to treat. Sometimes it requires surgery to allow for proper drainage and sometimes even that fails. On X-Ray sinusitis shows up as thickened sinus muscosa (lining). Often we see fluid levels. If the fluid is really liquid you see it pool with gravity (flows down). Thick pus doesn't pool as nicely. I think the report of freeform fluid is just that - thin fluid - that may or may not be be growing bacteria. The finding of synechiae just means that at one time the fluid was thick and rich with sticky mucous and protein. The sticky stuff "stuck together" forming bands or walls across the sinus cavities. And sometimes we can see the fluid within these little walled off areas.
It's not a serious finding and just means that you've had a doosey (official medical term) of a sinus infection.
The sinuses are built so that they drain excess fluid into the back of the nasal passage. Then you swallow it and people often report a sensation of swallowing gunk or feeling the presence of mucous in their throat. They are also often queasy. They do NOT drain directly into the ears. However, adjacent to some of the sinus openings in the back of the nasal paasage and at the top of the throat is the eustachian tube. This is a passage directly into the middle ear. This would be the only way that the fluid from a sinus could get into the ear. I've never heard of a fistula (passage) opening from a sinus directly into the ear. The middle ear's only way of draining is either out into the external canal through a hole in the ear drum, (in which case it would come out and run down your neck) or back out the eustachian tube into the throat.
So what you are describing has me stumped from an anatomy standpoint. And I have no clue what it means that you feel a crackly sensation in your neck. In your spine? or the muscles, or the throat?
Now here is the only catch. In my reading the other day on migraine I did come across a type of migraine that causes unusual sensations in the side of the face and the ear often with swelling of that side of the face. I wasn't feeling well and didn't bookmark it, or at least I can't find the reference again. Also all the sources state that sinus pain can trigger a migraine. Could some of your sensations be due to migraine aura and thus feel totally real, but be false sensations? You say the headache begins buiding about this time, and you feel weird "wavy."
Another, but probably unlikely thought. There are other mechanisms for fluid to get into either the sinus or the middle ear, but not both. It would be a leak of CSF (cerebral spinal fluid) because of a break in the bone or an abcess which ate through the bone from one of those areas. This is rather "out there" in likelihood. If you could present to the doc when the ear seems to be filling up they could sample some of the fluid, and test it for glucose and markers of CSF. It really would be best if they could capture some of this fluid and analyze it.
Okay - one more personal story. This only deals with a possibility for the middle ear filling with fluid - NOT the sinus. There is a problem called perilymph fistula - PLF. This is a leak of the fluid in the INNER ear (which flows around the hearing and balance organs) into the middle ear. It leaves the middle ear via the eustachian tube when it builds enough pressure, or you yawn (pop your ears) or swallow. I had a PLF on my L side in 2000. It usually results from some kind of trauma. The common types of trauma are pressure trauma (SCUBA divers, airplanes with lowered cabin pressure - mine), a blow to the ear, head trauma, severe straining or lifting, and others. Sometimes they don't know what caused it. Anyway I heard an almost constant "drip drip" and crackling when I swallowed or yawned. A PLF is almost invariably associated with dizziness/vertigo and it's usually severe. Is your "wavy" feeling a feeling of unsteadiness in space or dizziness? Do you fall?
Those are my ideas. Consider seeing an academic ENT specialist at a major university medical center for a thorough second opinion.
Again, another epic discourse. I wish I could have come up with something for you, rather than just an explanation of the anatomy of it all.
Good luck, Quix
Just wanted to tell you I did a little reading on what you've posted and don't have anything very cogent to say yet, but I'll keep trying.
You are clearly miserable and I've seen your posts here and on the Dr-to-patient forum. I have a few ideas, need a few answers and would like to read over more of your old posts before I try to give a strategy/or some ideas. I'm not feeling well today, but I'm not ignoring you. Be back soon, Quix
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