CSF Leaks presenting Sinus related symptoms

[repeat leaker]

Sorry for another post....I have lots of questions as I am grabbing at some straws since I have not been getting better.

Does anyone have any experience or know about CSF leaks causing symptoms similar to sinusitus? I will list my most current symptoms below:
*Headache that intensifies when I am up, usually mornings are decent then getting worse. I can lie down and get them almost completely gone but really have to shift into the right position, usually lying on my face or side.
*Ear ringing has gotten worse...maybe throbbing sounding earpain the past few days.
*Left arm pain, elbow and ring finger specifically.
*Neck pain (note maybe neck pain and arm pain are a totally unrelated issue??)
*Have had some clear nasal drainage (very slight). I also have had some drainage in my throat. I have been taking Mucinex, Sudafed and nasal steroids. Yesterday I had about 3 hours with pretty significant drainage and during this time my headache was a little better.

Yesterday my primary care saw me and said I had a little gunk in my nose. He put me on a ZPack antibiotic and some prednisone to see if it helps the headaches. He also, last week, put me on a beta blocker just to try and prevent some headaches.

I am really sorry for the long post here. I have a mylogram scheduled on Tuesday in Chicago (I live in PA) to look for the site of the leak but I am optimistic that the symptoms I have now are stemming from a sinus blockage only. The expense of traveling is tough to bear, but I have family there and I trust the physicians as I have worked with them before.

Just curious if a CSF leak in the head or spine (my spontaneous leaks have always been found in the spine) could in any way affect the sinuses to somewhat reflect sinus issues of drainage and headache. The meds I am now on should work today or tomorrow and will probably yield more insight...thank you for reading this long post and providing any and all thoughts.

THANK YOU. As always your responses on this forum provides me hope and great information, not sure what I would do without a place to ask questions.

RL

[Concerned Gal]

RL,

Funny you should talk about sinus problems and csf leaks. Firstly, I have always had problems with my sinuses/hayfever. I always have seemed to have stuffy, congested nose and always seemed to be infected (never got antibiotics for it though) When the pain at the back of the head started I immediately assumed it was my sinuses, and went to the Dr who prescribed a nasal steroid spray (around Dec-Jan 06). I stayed on that for four months or so and over this period I got significantly worse with the headpain/neck stiffness and stopped the spray, finally realising this couldn't be sinus related.

However I have noticed that when I was really really bad - unable to function at all my pain was signficantly worse in the morning and was really really bad on the days when my nose was particularly stuffy. There were times that the minute I opened my eyes in the morning even before getting up I had the pain that I would experience when I was up. In my opinion, the pain was still the pain related to low pressure (the leak + subsequent chiari) but something else was triggering it to happen before i even stood up. So I have always thought that on the days that my hayfever/nasal congestion is worse, the leak pain is worse. And i can say that the pain isn't traditional sinus related pain, I just think there must be some kind of relationship between the sinuses and the leak. maybe pressue of the sinuses pushes into the bit where the brain is and because there is a leak down lower, more fluid is pushed out the leak site as the pressure is pushing on it (like squeezing the top of a balloon filled with water when there is a tiny hole in the bottom of the balloon). I did have a full course of antibiotics in the middle of my whole experience as they thought i had a urinary tract infection (no symptoms for it) and the antibiotics that they gave me also used for sinus infection, but it didn't help at all with the pain level or symptoms.

My last head MRI also commented on the thickening/mucosa in my sinus passages which I thought was interesting.

From the symptoms you describe, I think it is low pressure (leak) that is causing you the problems and not sinusitis. You may have sinus problems that are exacebating the symptoms, but i think you have low pressure still.

Throughout my leak experience i have had problems on the left side of my body. Most prominent has been a tingling/tightening of my left lower leg, but at one stage it was also in my left arm and particularly my left pinky finger. So much so that I thought i had dislocated my finger (that's what it felt like) and it bothered me so much I'm surprised i didn't try and snap it back into place myself even though it looked fine and was not dislocated.

Even though my leak is thoracic spine (apparently):rolleyes: i did have a really bad taste in my mouth for a few months before I started to get a bit better. And i noticed when I was physically sick (and i was everytime i was upright for a couple of months) that there was a white substance I would constantly bring up (sorry for too much information - sharing in the interests of research) which I had never done before. As i've kinda stopped being physically ill all the time now (thankfully) I don't know whether I still would have it, but i think not as i don't have the taste so much.

Anyway, hope that has kinda helped. I do think your sinus problems are exacebating your symptoms, but i think you still have a leak. If you didn't have progress with a blood patch, or not enough to try another one, I would say another ct myelogram is in order. sorry :(

My thoughts are with you. If you need further info on anything just ask

[eirama]

Dear Repeat Leaker
I have not been on the site in awhile but I have to ask about the results of your Myleogram. Two Years ago I had a trans nasal repair for a spontaneous leak via the ethmoid sinus. I had a distinct drip from my nose and before the cisternogram they knew it was a csf leak. I had a large enough leak that they were able to test the fluid and confirm it was spinal fluid. I would be happy to talk with you if that is your diagnosis.

[ainee]

I get a stuffed up nose often and find breathing through it is impossible at times. I use a spray which mostly clears it. I always thought that my sinuses were the cause, but I noticed the other day, that the inside of my nostrils were swollen - no wonder I couldn't breath through them! I wonder why they swell.
I've had a very salty taste and salty feeling in my body, on and off for years, as I've explained on another CSF thread.
I asked my doctor about a CSF leak. His answer was "no, you wouldn't have a leak." I don't have headaches nor a drip anywhere, but believe head and spinal injuries I've suffered in the past, may have caused a slight leak that hasn't been detected in my many tests and MRI's, CT's etc.
ainee.

[jimc]

RL, I have a CSF leak in my head (left side) due to a craniotomy to remove an acoustic neuroma. I have the exact symptoms you list. My symptoms have become very volatile, meaning that they change frequently. I felt pretty good earlier in the week, but then I spent most of yesterday lying down because the throbbing pain in my head was so intense when I was upright.

The pain and numb feeling in my left arm and shoulder even drove me to get a cardiac stress test, which showed no problems with my heart. I'm not sure how a CSF leak could be causing numbness and pain along the left side of my chest and left arm, but maybe it is.

I have CSF drainage down the left side of my throat intermittantly. To me, it has a very distinct, metallic taste; I can always differentiate it from mucus. I have some nasal drainage, but rarely enough to actually drip off the end of my left nostril. If you have enough nasal drainage, you should be able to capture enough fluid in a sterile specimin cup (ask your doctor for one) for them to test and see if it is indeed CSF.

Good luck with the myelogram; I hope it shows something useful.

Jim

[rimo240]

Yes, if the CSF fluid drains into one of the sinus cavities it will mimic sign/symptoms of sinusitis. In my case a small hole at the top of the sphenoid sinus was where the fluid would enter. After filling the sinus cavity all I had to do was lean forward and the contents would spill out. I won't bore anyone with the the pain details we all know what that is like and we have all heard the the same promises from M.D.'s. Still we all hope for the rare pain free day and cheer for the even rarer individual who get cured

[Edward]

Hello Rimo and welcome to the group. So do you currently have a cranial leak? How long have you had it? What caused it? I have a CSF leak into my ears following a skull fracture last Fall - only it is apparently too small to show up on any tests...so here I sit living life pretty normally but constantly fearful of meningitis!
Take Care - Ed.

[rimo240]

Hi Edward. first diagnosed in 2003 as a spontaneous CSF leak. after the gammet of test I'm sure you are familiar with, MRI, CT, cistertogram, etc., they found the hole at the top of the sphenoid sinus. The cause was an apparent erosion of the bone caused by a defect they at first could not identify. Two trans-sphenoidal surgeries later I still have a leak. The leak is not as profuse as it once was and worsens only if I exert or lift anything over 10 pounds. I wake up each morning with headaches of 6 on the 10 scale and I hope it does not make it to a 9 or ten. The biggest concern is a keeping my inter-cranial pressure down because the meninges herniates through the hole. Also the threat of an encephalocele is always present.

[Edward]

Thanks for your response Rimo. So, what is your plan if you don't mind me asking? Do you just intend on living with this and hope that it heals? Or will you pursue yet another surgery? Sorry to hear you are in this situation and that the surgeries did not work.

Best wishes always....Ed.
:)

[rimo240]

Hey Edward, you caught me on a computer day. Usually I can't view a screen for too long. Unfortunately the only other surgery is a craniotomy that by the doctors admission only has a 25% success rate. And if I am in that 25% group I would have to go in every 5 to 6 years to realign a gortex sheath they would place under the meninges. Doesn't sound like very good odds in either case huh. The last CT showed that the bone showed sighs of deterioration on the right side of the skull, a condition like osteoporosis. You know what make it all worse is that I am medically trained and have over twenty year experience in the field of medicine. Sometimes not understanding is a blessing

[Edward]

Hey Rimo,

Yeah! I hear ya' as far as the old "ignorance is bliss" thing. If I cannot get a diagnosis and cannot be "fixed" then really knowing about this leak is doing nothing for me other than making me worry a lot. If it were a hundred years ago and this happened I'd just figure that there was something funny with my ears and that is all I would think.

I appreciate talking to you. It is nice to know that we are not in this thing alone. One more question for you - are you or your doctor concerned about the meningitis threat?

-Ed.

[rimo240]

Hey Ed,

Sorry it took so long to respond to your question but like I said before I don't have many "computer days". Yes the threat of meningitis is always there. Additionally the bone deterioration is always an area of concern primarily because a new fracture site can mean a new leak site. So I have to be careful not to bump my head.

Anyhoo one of the members wanted update info or in my case original info. So I am gonna head on over to the Leaker roll call

Peace out

[Edward]

Thanks for getting back to me Rimo. For what it is worth, there are two or three meningitis vaccinations that I read about that are recommended by some sources for people with chronic CSF leaks. I recently received the vaccinations (at least two of three anyway). If you have not done so, you may want to ask your doctor about them. The ones I have received so far are: pneumovax and H. influenzae. The third one is the mengioccal vaccine but I have received conflicting information on that one as far as whether it is totally safe to have it or not if you have a leak. So, I need to check on this third one still. Just thought I'd pass this on for what it is worth.

Take Care....Ed.
:)