Question for Cranial Leakers

[Edward]

Hi,

I am starting to notice that there are at least a few cranial leakers on this forum - and some of you have been leaking for quite some time. (I have a suspected cranial leak - see "Questions from Ed" post). Have any of you had problems with infection or meningitis? I am concerned about the possibility of meningitis because I see it mentioned so much on the internet in conjunction with leaks. But some of you have had leaks for a long time and maybe you just have not mentioned it, but I do not see you talking about having had meningitis. Is it that perhaps it is not as frequent as some studies suggest or have you just been lucky?

I'd appreciate hearing back from you because meningitis is my biggest fear :eek: with this.

Thanks....Ed.

[PainInTheNeck]

Hi Ed...

I am no authority on any of this. I am one of the newest here also so I want to be sure and represent myself correctly to you.

My experience with my leak which is unknown but most likely thorasic(just what I sense)and possibly I have lumbar leaks also from the barrage of needle pokes I had(5 times 3 for suspected meningitis(NOT) and 3 times 3 for attempted blood patch and finally 1 times 3 for successful blood patch). Anyway...my Doctors were only concerned with meningitis when they didn't know I had a leak and were grasping at straws to figure out what was wrong with me.
I saw an Infectious Diseases Dr. twice and numerous ER Docs, Neurologists and a Neuro-Surgeon. Not one of these Doctors has told me I need be worried about Meningitis. When I saw my NeuroSurgeon yesterday he says I definately need another blood patch but has left it up to me to decide if I get it before or after Christmas. He said the risk of putting it off is that I could land back in bed with symptoms that are not as easily controlled as right now.

The point I am trying to make is that the Medical Doc's do not seem concerned at all that I am at risk for meningitis.

Secondly I know when I first came home from hospital and after the sucessful blood patch that my arm started getting red and hot at an IV sight that had been in for a few days and was taken out the day I came home. I had been through **** and was panicked that something else was gonna make me real sick. I insisted on being taken back to the Emergency Room. Well...it was really nothing....bruising and soreness because it was in an akward place. I also had days where I would cry all day. I had some panic attacks(never had them before). So the point I am trying to make here is that our brains are affected, our central nervous sysmtems are affected. I know some of my thinking was irrational. I was assured by the Infectious Diseases Dr. and the Neurologist and Neuro-surgeon that my episodes of paranoia, bad depression and irrational thinking was a result of my Central Nervous System being "on edge" and that I needed to lean on the people around me for decision making and comfort.

So- Ed , what I am trying to come around to is this......the reason I would get a needle shoved 3 plus inches in to my spine is because I cannot function without having it done or that I will eventually not function if I dont get another one. That is where I am right now.

While getting a needle shoved into my spinal column is not pleasant and holds some risks and while I am not Doc or medical aythority....I would have to think that brain surgery to locate and fix a potential leak would need to be very necessary. From what you say you are having uncomfortable symptoms but you have not said you have horrible pain or that you cannot function as a result of your symptoms. I guess I am wondering right now if the risk of complications from brain surgery are way more dangerous for you at this time than the risk of meningitis.
All my best to you Ed and please keep posting. I kind of feel like your "site mom" and I care how you are doing. Hugs....Shelly

[Edward]

Hello Shelly,

Thanks for responding. I am wondering though if there is more of a threat of meningitis with a head leak as opposed to a spinal leak. I am speculating this may be the case but I really do not know for sure.

I think you are correct in your point about the risks of surgery outweighing the risks of a suspected leak. I think that is exactly why my neurosurgeon is saying. And I can understand that to a point. What I am having a hard time accepting, however, is that he apparently has a hard time "believing" in small or intermittent leaks. And because of this, he does not think I have a leak and therefore will not even order up a cisternogram because there is a slight chance of a permanent adverse reaction to the "junk" they inject you with. So, I am truly in limbo-land if I do have a leak. I cannot get enough fluid to test and I cannot get the cisternogram. So, I just sit around with the constant (and very obvious) sensation of fluid entering my ears and draining into my throat. You are right - my symptoms are not disabling but they are about to drive me insane at times due to the nearly constant feeling of fluid moving through my ears. And then on top of it is the worry about infection or meningitis.

Well, thanks for listening. I look forward to talking to you more and I hope to hear from some of the others here.

Take care....Ed.

[eirama]

The risk of Menningits occurs when ther is communication between the spinal fluid and outside to body. Crainal leakers are at risk if they are leaking through a sinus.

[jimc]

I've had a persistent leak in my head for 14 months now. One of my doctors is very blase about the possibility of meningitis, but another one, a neurosurgeon, is very concerned about meningitis and sent me directly to the hospital the moment he saw CSF leak out my nose. "Go directly there; don't even stop by your house," he told me. I have been told by several doctors that the higher the volume of the leak, the less risk of meningitis, because the germs essentially have to swim upstream from the opening to the outside world (your ear or nose), all the way to your brain, and the more CSF that's coming out, the less likely they'll make it.

Whatever the risk, it's not something to mess around with. If you see the symptoms of meningitis, which include fever and a sore/stiff neck, you need to get to the hospital, because meningitis is often fatal.

[repeat leaker]

Jim,
How did you know the fluid out of your nose was CSF fluid? Sorry to be gross, but can you describe it, etc..?

Thank you and so sorry for all your health issues and hope you have a quick return to normal.

RL

[jimc]

One doctor just assumed it was CSF because it was clear and was coming out my nose. Another doctor had me drip into a small vial to capture some and had it tested to confirm that it was CSF. A third doctor stuck a scope/probe up my nose and watched the fluid leak from above down into my eustachian tube.

Another clue for me is that I think CSF has a very distinctive, metallic taste. It tastes very different from regular snot or whatever you want to call the stuff that might normally drip down your throat if you have a cold or allergies.

With my situation now, where it's not coming out my nose, the doctors are assuming that the fluid filling up my ear/head is CSF because:
1. I've had a proven CSF leak
2. The fluid they can see behind my eardrum is clear, and "there's no other clear fluid up there besides CSF," they say

Jim

[Edward]

Hello Jim,

I have a couple questions for you since I believe that I too have a CSF leak occurring through my ear(s). First, did they ever have a hard time actually seeing the fluid behind your ear drum? Second, what are some of the sensations you have had with the fluid in your ear? (I actually sometimes feel the fluid slowly oozing its way through my ear and then dripping down my throat. Many times my ear will feel full, wet, itchy, or like there is something actually stuck in it.)

Hope to hear from you....Ed.

[jimc]

Ed, the two ENTs who have looked in my ear had no trouble seeing the fluid behind the eardrum. They both blew air into the ear to see how the eardrum responded, and declared that there was indeed a lot of clear fluid behind the eardrum.

The sensations I have include my ear feeling very full - lots of pressure. It just feels completely plugged up. I have very little conductive hearing in that ear, but much better hearing when they put the input on the mastoid bone and bypass the eardrum. Vision in my left eye is fuzzy, I believe due to the extra pressure throughout that side of my head. Sometimes, when I chew, fluid leaks out my left eye. I, too, feel fluid dripping down the left side of my throat. When my leak was bigger, I could feel the fluid go past my nose and on down the eustachian tube. Now I only sense it when it reaches a level even with my bottom teeth. My ear has not felt wet or itchy.

[Edward]

Thanks for getting back to me Jim. I went back and read your story and am curious about some things. So, all the procedures you had to try to fix your leak then did not work apparently? Or even made matters worse by causing more leaks? (Jeepers! That does not exactly make a person even want to try to fix their leak!) So, what is your plan now - just live with it and hope it heals? And have you had meningitis vaccinations? (I just had a penumovax the other day (which covers the most common types of meningitis) but am wondering if there are other vaccinations I should get also).

Also, I find your doctors comments interesting about the slow-flow leak being more a hazard since the bugs can swim upstream more easily than with a high-volume flow. That is opposite of what my neurosurgeon has told me and also seems contrary to a big Mayo study that I read about. They found that on average those who had very small or occult CSF leaks did not get meningitis until an average of 6 years from the time the leak started - which was a much more delayed onset than those who had bigger leaks. But, I am going from memory so maybe I am missing something critical from that study. I will try to find it again and post the link on here also. This is all so confusing and it is so hard to get good reliable information for a condition like this that is somewhat rare.

I look forward to hearing back from you and talking to you more.

-Ed.

[Edward]

Hi Jim and Everyone Else,

I need to correct my last posting about that Mayo study. I should of known better than to trust my memory on things like this.:rolleyes: Anway, the Mayo study was of about 50 people who had prolonged CSF leak. Of these people there were six who had occult leaks that presented about six years later with recurrent meningitis! The overall meningitis rate in the study was 27.5%. So, I guess really this study does not say anything about the meningitis risk for small or occult leaks. On the one hand, someone could argue that all six people with occult leaks got meningitis so the risk must be very great. On the other hand, probably the only reason they were included in the study is because they did get meningitis. Anyone with a small unnoticed leak and no meningitis would not have been considered and therefore it is impossible to draw a comparison.

Anyway, I wanted to clarify my last comment. I would be happy to post the link to this interesting study but are we allowed to do that on this message board?

Take Care....Ed.

[jimc]

Ed, my leak is a lot smaller than before the procedures, so overall, the procedures helped. Some helped more than others. The lumbar drain did nothing, as did the first leak-repair crani (second crani overall - first was to remove the tumor). At that point, I still had CSF pouring out my nose. The LP shunt was then inserted, and the CSF stopped coming out my nose, but was still pouring down my throat. They went back in and widened the shunt, and that didn't seem to help. So they did a third crani, and a CT myelogram a month later showed no leak. The LP shunt was removed in November, and shortly afterward, the leak got worse.

As for the meningitis data, I would put my faith in a Mayo study over what I was told by my doctors, who didn't offer any evidence to back it up. We're going to ask about it again when we see the ENT at Johns Hopkins this afternoon, because it's a never-ending source of worry. I have not had a vaccination; the doctors we've asked about it believed it wouldn't help.

Our plan now is to find a doctor who really knows CSF leaks and see him/her. The doctors who've done the operations so far are great at removing tumors, but they've never had a patient with such a persistent leak. These docs are literally saying, "I have no idea what's wrong - let's wait one year and see."

As I said, we're now seeing a doc at Hopkins, and he's great in that he's willing to really think through what's going on, and explain it to us as well. (Everyone at Hopkins is great that way, from what we've seen.) But my leak is also off the charts as far as he's concerned; he's never seen one like this. The only options he's offered us are a fourth crani (which he recommends against), or an ear-packing procedure where they remove your inner ear and fill the area. They implant a fancy hearing aid under your skin so you have some hearing on that side. We don't understand how this procedure would actually help fix the leak; it seems like it's just another way to contain it.

So we're going to ask the doctor at Hopkins today to help us get hooked up with Dr. Mokri at the Mayo Clinic, since he and Dr. Schievink out in Los Angeles seem like the two docs who have actually spent a lot of their careers dealing with CSF leaks. I need to get another CT scan (or probably a CT myelogram) to send to Mokri, because I haven't had one since the shunt was removed. The Mayo folks told me that Mokri will then review the scans and my medical records and decide whether or not he thinks he can help me. If so, it's 2 to 3 months to get an appointment.

Jim

[Edward]

Sorry to hear you have gone through so much Jim. I hope your appointment today went well. I'd be anxious to hear what you learned.

-Ed.

[GingerLox]

Just a little input regarding finding fluid behind the eardrum. They were never able to detect fluid collecting behind my eardrum, although I have had abnormal hearing, brainstem evoked, and ct scans related to my ears. I have what is called a patent eustachian tube, which allows the fluid through without the buildup.

GingerLox

[jimc]

Ed, the appointment was interesting. The hearing test showed that my conductive hearing was the same as my neural hearing on the left side. Both types of hearing are much worse than the right side, but on my last test, 6 weeks ago, the conductive hearing was much worse than the neural hearing. Also, the doctor couldn't see any fluid behind my eardrum, whereas 6 weeks ago, there was a lot. So he thinks the head leak has healed.

I'm not so sure, because I still have:
- Some sort of fluid draining down the left side of my throat constantly
- A lot of pressure on the left side of my head, centered on the ear
- Very loud tinnitus
- Hearing that varies a lot from day-to-day on that side
- Throbbing headaches when I stand up, like the kind you get when you leak

But I do feel a lot better than I did 2 weeks ago. Also, we have a concern about doing anything, especially a CT myelogram, because poking a hole in my spine will change the pressure, and could cause the head leak to burst open again. So we're going to wait 2 more weeks and see how I am.

What GingerLox added about patent eustachian tubes is very interesting. I'm going to ask the doctor, who is an ENT, about whether I might have that problem.

[Edward]

Hi Jim,

I am glad you are feeling better - that is certainly a good sign. Now, this issue with your ear is crux of the problem that I also have. Whenever I have been in to see the doctor my ear (naturally) has not felt that bad and so when he looks in it he has not seen any fluid. But my "leak" (I guess I need to use quotations since I have not been diagnosed with a CSF leak - yet) is episodic. Sometimes it is bad and sometimes it is not. Plus, I asked my ENT Doc once if there was just a small amount of fluid in the ear could it be missed through his exam and he said "yes." So, given the fact that CSF leaks are often intermittent (that is apparently an accepted fact) and given the fact that apparently a small amount of fluid can be missed through examination, then I do not know how your doctor can just say that it has healed.

And then to complicate matters there is the issue of the eustachian tube as you just noted. The eustachian tube naturally allows for drainage of moisture from the ear (even in a normal person without patent tubes). So, something I have wondered about is, does a person with a CSF leak necessarily have to have this sizable collection of fluid behind the eardrum or could there just be a little fluid there occassionally with most of the fluid just moving through the ear and on down the eustachian tube. For example, there have been times when I have felt immense pressure inside my ear but then there have been times when I feel almost no pressure but yet I feel the fluid oozing through my ear and trickling down my throat. So, apparently, through my own observations then CSF otorrhea does not necessarily have to present as ear pressure or fullness. I am theorizing that the times when I feel pressure are times when my eustachian tube is not functioning quite right so the fluid does build up in my ear. (I hope I am making sense here but I guess my point is that I really think it is possible that a person could have CSF otorrhea with almost no symptoms and without anything abnormal being found on exam. This is really a depressing theory because if the theory is right then how does one know if they are ever truly healed.:( ).

Well, I appreciate talking to you and learning from you.

Have a great day and weekend! -Ed.