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Neurology (Expert Forum)
CSF leak ? Help.
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CSF leak ? Help.
by RTroub, Mar 30, 2004 12:00AM
Following sinus surgery in late 2002 in which the surgeon punctured through to my brain sac ( he said he repaired it!), I began having a "mysterious illness." Dizziness, nausea, headache, passing out, extreme fatigue,drainage from nose, etc. These symptoms, usually lasting 6-8 weeks and then recurring every 8-10 weeks, were extreme enough to keep me from working and living a normal life. To make a long story short, I will summarize that I have since seen many different doctors and gone through a whole battery of tests with no definitive diagnosis until an ENT suspected a CSF leak. He performed a cisternogram which turned out positive for the leak. He referred me to a Neurosurgeon who also did a cisternogram to pin point the location of the leak. This time the test turned up "inconclusive". Meanwhile, I remain ill.
Their explanation is that it is an intermittent or slowly oozing leak and is not leaking enough at this time to pin point and surgically correct. They advise to wait for another round of serious symptoms and then start over with the cisternogram tests.
1) Does this sound reasonable?
2) The first cisternogram had pledgets placed in my nose for 24 hours--the second the pledgets were only in 4 hours--which is most appropriate to adequately diagnose?
3)CT scans are not clear enough to show a leak--are there other tests to locate it beside cisternogram/CT?
4) I have asked to see a physician/clinic that may specialize or have more resources and my doctors say that "it would be a waste of time, they cannot do any more...what do you think?
Their explanation is that it is an intermittent or slowly oozing leak and is not leaking enough at this time to pin point and surgically correct. They advise to wait for another round of serious symptoms and then start over with the cisternogram tests.
1) Does this sound reasonable?
2) The first cisternogram had pledgets placed in my nose for 24 hours--the second the pledgets were only in 4 hours--which is most appropriate to adequately diagnose?
3)CT scans are not clear enough to show a leak--are there other tests to locate it beside cisternogram/CT?
4) I have asked to see a physician/clinic that may specialize or have more resources and my doctors say that "it would be a waste of time, they cannot do any more...what do you think?
Doctor's Answer
by CCF-Neuro-M.D.-CS, Apr 05, 2004 12:00AM
Sorry for the delay. I should have an answer to you tomorrow. I wanted to check a few more facts. Thanks for your patientance.
2. The first one -- the 24-hour test is more sensitive and more diagnostically significant.
3. An MRI is more sensitive than a CT.
4. A waste of time for who? It certainly wouldn't be a waste of time for you -- like I said, it's your health and you should be your own advocate, especially because you are symptomatic to a degree that affects your daily activities. Get yourself to an academic health center where they have the latest technologies and often deal with the toughest medical illnesses -- exactly like the one you have.
Best of luck my friend.
You know it's tough when you are feeling so ill and the doctors you are seeing for help seem to "write you off." Having these problems and then being told that "we are doing all we can" and/or "you'll just have to wait" seems ridiculous to me.
I have seen so many different doctors since 2002 and inquired as to a clinic only to be treated as if "How dare you question my authority!"
Is it possible to get into a clinic without the support of your physicians? They lead me to believe that they must refer me first.
I think your attitude is commendable actually. Questioning your doctors for more information, for more answers, for other possibilities and approaches to your care, for more options than the ones you have been given, is an excellent approach. I know what you're talking about with that "how dare you question my authority." You should be questioning their authority, more on a partnership level than an adversarial level of course, but either way, if the best they can tell you is to "live with it" for now, and you are in distress, then you should have the opinion "live with it" confirmed by another neurosurgeon. At least then you will have explored the issue more thoroughly and if nothing else, even though the symptoms may persist, at least you'll be comfortable with the weight of the medical opinion.
Medical Center and that may be a thought too.)
I believe my insurance will cover and not require referral. Of course, I will make the appropriate phone calls to check for sure.
The referral I spoke of was medical referral. My doctors are of the opinion that these institutions would be of no additional help and require their backing or reference (referral).
Thanks for your support and understanding.
I think that this is a great site for all of us!!
I then went to TWO academic health centers within a short span (I got in quick because my GP pulled some strings on my behalf) and it turns out that I didn't even have this alleged condition for which this particular doctor wanted to operate on me. Academic health centers -- although they have their downsides in some respects -- often give the most comprehensive treatment. Most people, given the circumstances, given the urgency this doctor put forth, probably would have succumbed to her treatment plan. But I walked out of there, because I knew -- at a visceral level -- that she was wrong -- even if her resume was impeccable.
And to this day, I am glad I had the wherewithal to walk out of there and get to the bottom line myself. I got the opinions I needed, and that gave me tremendous peace of mind. So what I'm saying, essentially, is to get to the bottom of your conditions, as you clearly are doing. Best of luck once again.
Several posted AFTER mine have been addressed and mine is left in the middle.
It worries me that they cannot answer or I have been forgotten.
Thanks again!
I received great attention from a highly talented and knowledgeable physician. I learned so much about my condition and what I can expect in the months to come.
I will have some tests done in my home area and a return to Cleveland in July for additional testing and possible surgery/correction.
I urge anyone who is getting "the runaround" and less than knowledgeable care to get a second or even third opinion--and so far the Cleveland Clinic rates high on my list. I now feel comfortable with the level of knowledge and care.