Cranial vs. Spinal CSF Leak

[repeat leaker]

Does anyone know how to determine between a spinal CSF leak and a cranial CSF leak? What are the differences in diagnostic tests? Is it possible to have a spontaneous cranial CSF Leak?

[Concerned Gal]

RL,

Mmm, interesting one. I don't think i've read much in the way of cranial leaks (that I can remember). My understanding is that you can have a spontaneous csf leak in the head region. When they were trying to find my leak, I asked my neurologist about finding leaks that were in the head and she said that the myelogram does track the dye all the way up to C1 so any leaks up that high (technically that's right at the back of the head) would be seen on the ct. I would think that if you had a leak in the head region that you would probably be able to see the pooling of fluid if you had an MRI with contrast. Just a guess. But i guess the fluid would have to go somewhere - either pool in the head, or come out the ears, eyes, or nose. Keep us updated on what you find out.

[Edward]

Hi Repeat Leaker,

Well, I am not a medical professional or anyhing like that but I have done a ton of research on the Net over the past couple months on cranial leaks (because I think I have one). Anyway, yes, it is my understanding that cranial leaks can be spontaneous (as well as from traumatic causes). As far as tests, there seem to be various ones depending upon who you ask and how large the suspected leak is. Most cranial leaks will leak out of the ear or the nose (but not always). So, the first thing they try to do is have you collect some fluid for testing. The best test is apparently the beta transferrin test and if the fluid comes back positive for bt then they know you have a leak. The problem is that sometimes (like in me) the leak is too small and you cannot collect enough fluid to be tested. Or, it drains down the back of the throat (like me) and you cannot collect it at all.

There are other tests that can be done to determine if you have a leak. I think one of the most common is the CT-cisternogram where they inject a radioactive solution into your spine and then perform CT-scans of your head at various times to see if any of the radioactive "stuff" leaks out anywhere. There are apparently some slight risks with this procedure as my doctor has been reluctant to do it based upon simply a suspicion of a small leak. There are other tests also that I have read about and I hopefully am going to pursue one of these tests for myself. These tests include things like using just MRI to find a leak, injecting a solution (either dye or something with radioactivity) and then having cotton pledgets located in various places like at the opening of the eustachian tubes. The pledgets are then collected hours or days later and analyzed to see if any of the dye or radioactivity has shown up - which would indicate a leak. There may be other tests also. When I have a chance, I will find some of my better links that I have run across and I will get them to you.

Then, once they know you have a leak, I think there are different tests to determine where the leak actually is (or maybe some of the above tests also can show that - I'm not sure). My knowledge in this area is sketchy as I, at this point, have just been concentrating on trying to find a test that will show I have a leak - rather than worrying about where the leak actually is.

Again, I am not a medical professional so take the above information with a huge "grain of salt" but I just wanted to let you know my understanding.

Talk to you again....Ed.

[repeat leaker]

Thanks for the replies. I have been struggling lately and not sure why. About a month ago I had 2 high volume blood patches, 7 days apart. Since then I have still continued to have left arm pain, neck pain and headaches. I have had throat drainage but recently have occassional fluid from my nose. It is probably a cold and I am taking Sudafed to see if that clears it up.

The headaches, at times, are very hard to get rid of even when lying down.

If anyone has any thoughts that would be great. I may get in for a myelogram to try and find this one, even though I hate mylograms because it is a guaranteed hole.

RL

[PainInTheNeck]

Hey RL......I am so sorry you are suffering so. You said if anyone had any thoughts and I did have a thought. When you said the headaches are sometimes hard to get rid of even lieing down....I thought 2 things.....maybe the high volume patches are causing a reverse situation temporarily...as in too much fluid...? Also I remember reading that some research is suggesitng that once our fluid is low that our brains can become confused about what is proper level.....so..for what it's worth those are my thoughts.

My feelings are you need a hug! I hope you get better and better!! You have been through so much.
HUGGGGGGGGGG

[maryland3824]

Did you start having low-pressure headaches after a lumbar puncture or was it spontaneous? Are you actively leaking fluid out your nose/mouth?

Sometimes an abdominal binder can help with some of the headaches. Caffeine is also supposed to work.

Before you get a myelogram I would ask for an MRI of your entire spine.

GL

[Concerned Gal]

RL,

Have you had an MRI of the head recently?

When you said problems lying down as well, I thought (like Shelly) maybe it's not a leak. I know that you can often get hematomas from prolonged leaking (and you have been leaking on and off for ages), or maybe a fluid collection in the brain. I know of someone who had a leak and had both the above even after having surgery on the leak - although post leak the hematomas were smaller.

Just a thought.

Take care

[repeat leaker]

Thanks so much for the great ideas.

I recently had an MRI of my cervical area due to the left arm pain...I still don't have the official reports but wording from the doc was "slight narrowing". Not sure exactly what this indicates or why.

I have not had an MRI of the brain recently nor do I think the MRI viewed my entire spine.

The fluid idea is a great one...I have been drinking TONS of fluid everyday. Maybe I am merely in a temporary state of change regarding CSF volume which is causing headaches. Not sure how this would relate to my neck and left arm but maybe increased pressure on a nerve??

Hoping for a better day today, yesterday afternoon and evening was close to unbearable with throbbing teeth rattling headaches not relieved lying down, while up or with an abdominal binder. Will try all this again today.

Thanks again. You are all wonderful and provide great ideas...thank you.

RL

[jimc]

I'm new to this forum, but unfortunately, I can offer some first-hand insight on the difference between spinal and cranial leaks. I've had a persistent cranial CSF leak for 14 months. It resulted from a middle-fossa craniotomy to remove an acoustic neuroma. I've had 2 more craniotomies to try and stop the leak, as well as 3 spinal surgeries to insert an LP shunt, widen the shunt, and finally remove the shunt. I also had a lumbar drain at the very beginning. I've had a CT myelogram test. Several of the these operations and procedures caused spinal CSF leaks, so I've experienced both kinds of leaks. Most of the spinal leaks resolved themselves with a few days of bed rest, but several did not, so I've had a couple of blood patches.

For me, the spinal CSF leak causes a crushing headache when I stand, which is relieved somewhat when I lie down. Strong pain medication (e.g., vicodin or a bunch of Advil) helps a lot. My first spinal leak was so large that I rated the pain 9 out of 10, and when I arrived at the ER, my brain was starting to shut down my vision. None of the subsequent spinal leaks have been nearly that bad. Having the LP shunt was like having a constant, small, spinal CSF leak. Every time I moved my head, it felt like someone had just bonked me on the head with a hammer. If I bent over and put my head below my spine for even a few seconds, I had tremendous head pain, and then felt really crummy for anywhere from a few days to 3 weeks. Since they removed the shunt 2 months ago, those movement-induced pains have gone away.

In contrast, the cranial leak causes constant pressure in the left side of my head, centered on the ear. Vision in my left eye is blurred, and my face is swollen on that side. It makes me feel kind of out of it all the time; my concentration is not very good. I also taste CSF going down my throat; to me, it has a very distinctive, metallic taste. No medicine reduces the head pressure or pain, not even Advil. We recently visited family in Lake Tahoe, CA, elevation 6000 ft, and I noticed that my head felt a lot better there. I guess the reduced air pressure also reduced the pressure in my head. When we got back to sea level, the pressure increased.

A year ago, I took Diamox, which is a drug for altitude sickness that has the side effect of reducing the pressure in your head. The theory was that that might allow the leak to heal. Unfortunately, after 1 day on the drug, I could no longer feel my feet or hands, so the doctors decided I was somehow allergic to it, and I stopped taking it.

The CT myelogram was done a month after the 3rd crani, when I was still tasting CSF. It showed no leak in my head, but here I am 9 months later with all the doctors now agreeing that I still have a cranial leak. So apparently these tests are not 100% accurate.

The various operations and procedures have greatly reduced the volume of my leak. When it was going full-bore, CSF leaked out my nose every 5 seconds or so, and a head CT scan showed a lot of fluid pooled in my left mastoid bone (the big bone behind your ear). Comparing that to the right side made it obvious that there was a ton of fluid on the left side. Now that my leak is much smaller, recent CT scans have not shown excess fluid on that side.

For me, caffeine definitely helps my head feel better. I'm not a coffee drinker, so I drink Coke and Red Bull.

[waterlover]

Hi Jimc,

Wow, sounds like you've been through a lot.....and unfortunately have had the distinct experience....though definitely not pleasure of experiencing both spinal and cranial leaks.

You raise some interesting things....the use of diamox, which lowers csf fluid production....I know is common practice especially with pseudotumor cerebri, and I have heard physicians trying to "dry out" the leak site sort of speak so that it will heal. I do think, however, many physicians underestimate the further lowering of csf pressure and it's ramifications.
I was curious by your differing headaches with the two leaks. I've only had a spinal leak, though for way too long. I've heard one speculation by a neurologist that spinal leaks present as a more sucking, pulling down head pressure and pain....which I liken to G-forces. This sensation may be explained by some differential in pressure between the distance from the leak site to the head. I'm probably not explaining it too well, but if the leak is in the head then, though it certainly can bring pain, it is not the sucking down feeling pain because there is less distance between the leak site and the head and therefore less differential pressure. Probably not even good to compare because both can produce sickening headaches and I don't want to minimize anyone's condition......and there may be nothing to the theory. It's curious though because even though both types of leaks lower csf in the head, anectodally, I've heard of more spinal leakers complaining of the "sucking down" feeling. I've heard of several people with cranial leaks who may have other symptoms and even very little or no headache, though I'm aware of many who have horrendous headaches (including our own Dagaz here on this forum). Plus when any chronic pain has gone on for so long, nerves may become desensitized. With spinal leaks almost all have horrendous headaches, though they too can vary.....interesting!!

I'm intrigued by your 6,000 ft elevation experience. Have you tried flying?

My best for a complete recovery!!--waterlover

[jimc]

Waterlover, when we were on the airplane flying to Tahoe, my ear opened up a little and my head felt better. I assume that's because while the plane is pressurized, the pressure is less than on the ground near sea level. I'm sure they only pressurize the airplane as much as they have to for minimum comfort in an effort to save $. Since I also felt better in Tahoe, I'm thinking maybe I should go live in the Himalayas for awhile...

I believe I can tell the difference between the head pains caused by a spinal vs. a cranial leak. For me, the spinal leak feels like someone is squeezing my head in a vise. I could see how some people might describe it as a G force-type feeling or sucking down sensation. When I had the lumbar drain for 5 days, which was the docs' first attempt to fix my head leak, the squeezing pain was pretty unbearable every time they drained me (30cc drained 4x/day). But in the ICU, where they stick you for a lumbar drain, they're happy to give you very strong pain relievers and let you drift off to sleep.

For me, the spinal-induced pain is much sharper than the cranial-induced pain, which for me is a more constant, typical headche-type pain: my head always feels like I just fell down and landed head-first on a sidewalk five minutes ago. But the cranial leak also makes me feel out of it all the time; my concentration is 1/10th what it was when I was healthy.

Here's hoping you stop feeling that sucking feeling soon.

Jim

[waterlover]

Jimc,

Thanks for your reply and well wishes. I'm six years post two epidural shots....two years in bed, followed by slow recovery each year. Last few years I've been completely functional though still 24/7 head pressure....though this past year has been my best year. I'm still having trouble exercising but my neurologist though can not say 100% I'm not leaking, feels my head pressure is more that my meninge's pain receptors have been "turned on" vs a leak. My head pressure, thankfully, is no longer that "sucking down" feeling but more like a vise around and top of head. I think your descriptions of the different headaches are important descriptions and quite valuable to your physicians.

Anyway, I haven't flown since my leak started.....used to fly regularly. It would be safe to say, I'm terrified.....but am starting to feel better about the whole concept. I started a low dosage of Inderal (beta blocker) and it has helped my head a little. Hopefully, a few successful flights are in the cards this year. By the way, I know of another person with a leak who experienced temporary improvement at higher elevation. Not a bad idea, the Himilayas......or the space shuttle :).

Best of luck--Waterlover

[eman]

Hey I just wanted to add some info to this post. Schievink told me that 1 out of 10 leakers (I think he was talkin about spinal only) have a right or a left sided syndrome. I wonder if I have a cranial leak. Most of my symptoms are on my left side, centered around my left ear as well. The can intensify while upright, but also while laying down in certain positions on a pillow. I've only seen what looked like sinus fluid drain out my nose twice, a light yellow... I'm not sure what to think. I'd never had something like that happen before.


eman