How long can one go with an undetected CSF leak?

[elginx]

I had brain surgery/lumbar puncture for an AVM 20 yrs ago. For the past 5 yrs or so I have been very ill w/ a variety of seemingly unrelated symptoms.
The most distressing are terrible headaches, nausea, dizziness, muscle pain and stiffness and mental fogginess. The last month I have been experiencing a fullness in my ears and tinnitus.
My dr finally sent me to an endocrinologist who discovered I have some endocrine issues but they do not explain all of the symptoms.
While looking at causes of left arm pain I somehow came across CSF leaks. I had never heard of this problem before but when I read the symptoms they seem to fit perfectly with what I am going through. Occasionally I have a clear liquid drip from my nose and while I thought it was strange, I never thought it was anything important. The fluid comes maybe once every few weeks and it is always a small gush and then it's over. I always have a drip in the back of my throat and have been taking sinus medication for years.
I already have a referral to a neurologist in the works but I'm wondering if I should mention this to him/her. Is it possible to have a leak 15 yrs after surgery or could it have been leaking for 20 yrs? I had a CT scan recently (no contrast) and nothing abnormal showed up.
I'm unsure about how the slow type leaks occur. Any info would be appreciated.

[Edward]

Hello,

Well, I hope you do not have a CSF leak but certainly with your symptoms and your history, you should check into it. I can tell you from my own experience, I have been leaking for 14 months now and yet have not been diagnosed with an active leak. In the days and weeks immediately after fracturing my skull I informed my local doctors that I was concerned about a CSF leak due to my symptoms (feeling of fluid in my ears and occassional dripping from my nose). I was told that I could not have a leak because it would be more obvious and I'd be in worse shape. Or I was told that if I had a leak it would have healed in a couple weeks. About 8 months later I went to Mayo Clinic in Rochester, MN and they reviewed my films from the time of my injury and said, "yes" I definitely did have a leak at that time. They then performed a cisternogram test and it all came out normal and so they could not find an active leak at the current time. BUT my symptoms are pretty much the same they were right after my injury so I know I am still leaking. My leaking is apparently small. I am unable to catch enough fluid to have it tested and if the cisternogram does not show the leak, then they may never find it! So, in answer to your question, I believe it is very likely that there are people with undiagnosed leaks for years or decades. Hey, there are people on this site who have had KNOWN leaks for years. So, a small occult or hidden leak could easily persist.

If you can ever catch enough of the fluid for testing, that would be the easiest way to determine if you have a leak. My understanding is that you need at least about 10-15 drops of fluid (but confirm with your doc) to be tested for beta-transferrin. The fluid has to be tested quite soon after it is collected, but again you should talk to your doctor about the particulars.

One other bit of advice - not every neurologist is going to know a lot about CSF leaks so do not be surprised if you have to seek out someone who really has experience with leaks. Some Ear Nose & Throat Doctors also have experience with them.

Take care and keep us all posted on your progress.

-Ed.

[sadlisa]

Hi Elginx,

I too wonder if I could be suffering from a leak. I had a trauma at the same time as meningitis. Ed is right in seeing if you can see someone who knows about these things. I have had a hard time getting my doctors to realize this might be my problem. I have now been sent to another neurologist who I doubt has any more experience with this than the last one I saw. That is the trouble with a HMO system. Very hard to get an outside referral.

You mention being sent to an endocrinologist. I had a high calcium level and ended up having a parathyroid removed to correct this. This was 6 years after my meningitis/trauma(3 years after my symptoms got worse.) I sometimes wonder if my body was trying to fix the problem by producing more calcium. I also have many of the same symptoms you have. All seem to get worse when I exert myself. If I have a rough day I can expect to be floored the next 2 or 3 days after. I also have more problems with the sinus and drainage to the back of my throat. Rarely do I have a runny nose.

Good luck, and keep us posted. Thia

[elginx]

Thanks for the reply Ed
Unfortunately I have only one shot at seeing a neurologist w/ my insurance. It is very difficult to get referrals. My plan is to test the fluid with my glucose meter before I see the neuro. From what I read on this forum, it should work and is a good indicator that the fluid is CSF. The only flaw in this plan is that I don't know when the fluid will make it out my nose as it usually drips down my throat.

Thia
I wondered the same thing. One of the problems I have is type 2 diabetes. I am in my early 30's, I eat very healthy and I am not overweight.
I also feel worse after I exert myself, I believe that is related to adrenal problems. Have you had blood tests recently? Hypoparathyroidism can cause fatigue and is sometimes a result of parathyroid removal.
Good luck to you as well. The hardest battle of all seems to be getting doctors to listen. I hope your new neurologist is able to help you.

[sadlisa]

Elginx,

From what I have read, Beta 2 transferrin is the test of choice. Glucose is not the standard test anymore. So you might ask for the Beta test instead.

I did have the one parathyroid removed a year ago and my energy came back almost instantly. Before it was removed I was sleeping 9-10 hrs at night and needed a nap for 2-3 more in the afternoon. I now sleep a normal amount but do need to rest several times during the day to ease my headaches and wooziness. My neck and shoulders always ache. The sinus is still having problems after sinus surgery last Sept. I had a health appraisal last November and all blood test were within normal range.

I agree it is very difficult to get the doctors to listen. I have asked questions that often put them on the spot. I now send a note/letter in advance of my appt. If it is a new doctor I give them a brief history and then a list of my concerns and questions. If I have some research I also send that too. I make sure to note the day and time of the appt. on top of the page. Have a copy to bring with you so you don't forget to ask something. The doctor can easily get distracted and skip over one or two questions.

If the neurologist has no answers, you may try a HNS(ent) They maybe can see what is going on with your sinus. Mine was suppose to check for beta2transferrin when he did surgery but said he didn't because of the look of the mucous. I think (because the surgery schedule was behind) that they forgot and rushed me through. My sinus had showed problems for over 3 years by the time surgery was done. Of course it was infected. How can anyone tell by the look of it if spinal fluid is present. So be brave and ask the questions. Thia

[guineapig]

symptoms you list that are in common w/ reported csf leak symptoms: terrible headaches, nausea, dizziness, muscle pain and stiffness (particularly in neck and back, back ache often at sight of leak location in spine), mental fogginess, ear fullness, tinnitus, left arm pain (radicular pain) also.

i have read medical literature of a spinal leaker of 10 years who was diagnosed, blood patched and had improvement. csf leaks are not a new medical phenomenon of the 20th century, like aids. yes, elginx, to answer your titled question. people have had csf leaks since cain killed able. and no one was diagnosed w/ a csf leak until the 20th century; despite that csf was described in what was it 3rd or 5th century bc in greece and again in the 19th century.

what is the taste of the fluid that drips in the back of your throat? there is a consistent report of a particular taste which a number of cranial leakers have described.

one may have a csf leak with no symptoms. all chronic leakers are unique. the most infamous symptom of a spinal leaker is the i-want-to-die-it-hurts-so-much headache. yet med lit i’ve read of numerous spinal leakers only with a local backache, which is what prompted diagnostics.

re your symptoms, ie headache, increasing after you exert yourself: physical exertion of different kinds increases csf leaking due to increased pressure in the fluid basins from the exertion. this in itself is not diagnostic, just another clue to add to the puzzle of others.

the small gush of fluid which comes every few weeks… does it come after getting up in the morning? often this is the case w/ cranial leakers because it has had a chance to collect and build up after being prone for so long. so the pressure of the pooled csf either inside the meninges or outside is then only sufficient to cause the leak to be noticeable by a direct recognition of leaking cs fluid.

yes, getting doctors to listen. the 2nd most common symptom of chronic leakers, idiots for physicians.

re neuroimaging and scanning: many scans neither confirm leaks nor that doctors have butts. yet we know they all are, i mean, they all have one. no imaging technique picks up all leaks. in addition, some meningeal compromises are small so leaks are incremental; so even if an imaging technique was 100% accurate, if your not leaking at the time of the imaging, “no leak” saith the doctor.

[guineapig]

hey Ed, you might be better served by thinking that you have not had neuroimaging which confirms your csf leak. most leaks are diagnosed clinically by symptomatology and patient history and maybe some maneuvers (maybe). most blood patches are done on patients who have had no imaging confirmation.

you probably get this already or are already aware. so i suppose i write this for the benefit of other leakers who also have been abused by inexperienced, uneducated physicians who give false negatives due to their over-realiance on and abdication of good judgment to imaging.


Hello,
Well, I hope you do not have a CSF leak but certainly with your symptoms and your history, you should check into it. I can tell you from my own experience, I have been leaking for 14 months now and yet have not been diagnosed with an active leak. -Ed.

[LauraL840]

most leaks are diagnosed clinically by symptomatology and patient history and maybe some maneuvers (maybe). most blood patches are done on patients who have had no imaging confirmation.


Just to echo this ... my husband had no imaging confirmation (although he's had EVERY imaging study possibly done in attempt to find his leak.....) and he's had 4 blood patches and 2 epidural fibrin patches.