Pain Management

[Jaded1xx]

What does everyone do for the excrutiating headaches? I take Norco (when my docs feel like giving it to me) and it makes a dent, but that's about it. Unfortunately I need to take it every day, but I have never abused it. If anything I use less than I need so I don't run out, and I can continue to work. I have tried EVERYTHING else - I've tried 30 different meds including but not limited to antidepressents, beta blockers, anit-seizure meds, muscle relaxers, you name it. Do any of your doctors give you a hard time when you need a narcotic pain reliever? I would love to hear your stories and suggestions.

Thanks guys!

Christy

[repeat leaker]

Christy,
Funny you should ask - I have an appointment tomorrow with a pain clinic. I have used Vicoden, doesn't do a ton for the headaches but does help my neck and back pain.

I will share any insight I get tomorrow. Hoping I can get some meds that will make work bearable for me so I can return.

[guineapig]

Jaded,
Have you just begun? Mmmmmm. Self-righteous doctors a plenty! One with ICH must not only find a pain management doctor who has experience treating one patient with ICH, but who does actively treat (other) ICH patients. Ask for a referral for an ICH-experienced pain management dr from your neurosurgeon. When you find the one, they are rare, they must seemingly fool around Rxing various drugs they otherwise seem to know won't do anything before prescribing appropriate painkillers. Keep in mind, drs must protect their licenses.
I am still, guineapig.

[Jaded1xx]

Well, my third pain clinic turned me AWAY!! Said I needed to see a neurologist - um, I've already seen about 7 of them!!! So, thank God a co-worker referred me to their doctor, who is prescribing me Norco for my pain. He was so understanding, and didn't make me feel like druggie which was a nice change! If docs could only understand how being empathetic and caring can really help a patient in pain...

Another question - are there any cranial leakers out there who don't have a headache all the time? My doctors are telling me that a leak in the sinus would not cause a headache - only a spinal leak would. Which, from what I read is incorrect so I would like to get a consensus. Thanks guys!

[Edward]

Hello,

I just responded to Ainee yesterday regarding this subject but my understanding is that you can certainly have a cranial CSF leak with no headache. I apparently have a small leak into my ears and have absolutely no problems with headaches. In fact, I have no symptoms whatsoever except for fluid entering or just being in my ears and occassionally the sensation of it dripping down my throat.

Best wishes....Ed.

[guineapig]

Jaded,
Remember that line from Gollum in the 2nd installment of the Lord of the Rings movie, Two Towers: "dirtie, little hobbitisizs". There you have it: "dirtie, little neurogitsizs". They pretend to know about csf leaks, they even pretend to know about csf. They are pretty good cashing insurance checks though. Get thee to the neurosurgeon. And get a neurosurgeon referred pain management dr who has had experience treating patients with ich. Neurologists are good for treating 2 out of 10 symptoms and one of them is theirs: symptom 1) a patient who has too much money or good insurance; symptom 2) a cabinet overflowing, full of drug samples unloaded by a peskie drug rep.
guineapig

Well, my third pain clinic turned me AWAY!! Said I needed to see a neurologist - um, I've already seen about 7 of them!!! So, thank God a co-worker referred me to their doctor, who is prescribing me Norco for my pain. He was so understanding, and didn't make me feel like druggie which was a nice change! If docs could only understand how being empathetic and caring can really help a patient in pain...

[PainInTheNeck]

Iam fortunate enough to have healed mostly. I have some pain periodically and some loud head noises and internal pressure. I just wanted to say that Dr. Raj Tewari in Indianapolis is a Pain Specialist/Anestesiologist and helped me tremendously. In case anyone is close to Indy or in case you can look for Docs in your area with these specialties. Jaded...Since you have been to pain clinics this might be redundant but ...just in case it could help someone thought I would go ahead and post.

[Jaded1xx]

Thanks so much for all the input! Unfortunately, I'm still officially undiagnosed even with TWO pledget tests confirming a leak. The docs like to say that it still isn't definitive because that can't locate it - they think it's the left sinus (high count) but due to the fact that it's intermittent and a slow-leak it's probably going to be impossible to find. I was supposed to have the left sinus patched anyway last week, but they wanted me to have some more testing first to make sure I wasn't leaking from my spine. Um, hello???? All of this started after sinus surgery - doesn't 1 + 1 = 2???

Anyway, this is why the pain clinics don't want me - I don't have a diagnosis. So, the doctors are more than happy to just let me suffer. I did finally find a doc that will help me with my pain control, but unfortunately I've about maxed out my dose of Norco. I've tried everything else, so I don't know where I'll have to go from there. I'm just hoping that they will perform the surgery soon, so I can (hopefully) get on with my life...

If you want to know my story, it's posted under "Traumatic CSF Rhinnorhea". I'm just so happy I found this board - I have learned so much, and I don't feel so alone. Sometimes the weird sounds I hear in my head, the pain, pressure, dizziness, all that fun stuff threatens to engulf me. The worst part has really been the lack of understanding on the part of the doctors. It seems as though as soon as you mention headache they blank out. Oh, and CSF leak? Some doctors don't even know what it is!!! Ha!

Again, thanks all for the words of wisdom and support!!

[PainInTheNeck]

Hey Jaded...

I just an aha :eek: moment that may help you. Do you live anywhere near or could you get to either Dr. Scheiveink at Cedar Sinai in the L.A. area or Dr. Mokri at Mayo Clinic in Minnesota. Since these Dr's specialize in CSF leaks maybe they would not be so afraid to diagnose and even be dedicated to a diagnosis?????? Just maybe....:confused:

[Jaded1xx]

Thanks for advice! I have been to Mayo and they did nothing - not so much as a test. BUT, I didn't see a CSF leak specialist. Maybe I should go see Dr. Mokri, but I'm so afraid of wasting my time and money again. I think that if these docs at Northwestern end up not helping me, this may be my only option. I live outside of Chicago, so Mayo is just a 4 hour drive away...

[PainInTheNeck]

VERY very best of luck to you! If you are just outside of Chicago then you are also about 3 - 4 hours from Indianapolis. I could call Dr. Tewari's office and ask if he has any experience helping people with cranial leaks, if you want me to..just say so.

[Jaded1xx]

YES - please ask him. I'm having the worst time finding a doc that has any experience with small cranial leaks. They all understand the huge leaks caused by trauma, but not my kind of leak that was caused by sinus surgery. Thanks so much!!:o

[Edward]

Hi Christy,

Boy! You said it! I am having the same problem regarding my small leak. Both neurosurgeons I have seen seem well versed in the large noticeable leaks but the small ones are almost "theoretical" to them. But, from what I have read on the internet, the small ones need to be taken seriously also. There was a big Mayo study done that found that even people with "occult" CSF leaks still got recurrent meningitis.

So, what did they do for you when you went to Mayo? I am thinking about going there myself but don't want to waste my time.

And do you have pretty much conclusive proof that you have a leak? (Or are you like me that you know you have one but cannot prove it).

-Ed.

[dagaz]

Edward, I have had a fast flowing CSF Leak going on 14 Years come February. I have had WAY too many surgeries to try and repair my leaks. I suffer from severe head aches and spend 80% of my time laying flat.

If your suspected leak does not cause pain why would you want it fixed. Meningitis is not all that common with Cerebral leaks, I am just sure to always wash my hands and have the house clean. It makes a difference. My neuro surgeries have caused my leaks to be worse. I would think hard before any surgery, it could be worse you may have to spend the rest of your life laying flat because of the pain, and a more severe leak.

[Edward]

Hello Dag,

Wow! Thank you for your response. It was very helpful hearing from you. I remember your story well. You are sort of in a league all your own here as far as length of a leak. I definitely do not want any surgery. I wish this thing would just heal on its own. Maybe I am being swayed by what I read on the internet but everything I read says if there is a leak then you get it fixed because the risk of meningitis outweighs the risk of surgery. But it is so hard to get reliable information. I have seen statistics that say the risk of meningitis ranges anywhere from 10% to nearly 100% with a persistent leak. And then my local neurosurgeon says what you say - that the risk of surgery is greater than the leak. So, who does one believe and how does one decide what to do? Certainly, if I had had the same experiences you have had I would be thinking "don't mess with it" but supposedly (again from what I have read) most people who go in for surgery end up having their leak fixed. My plan is to try to get in to see someone who has some real experience with these leaks so I can get the best opinion possible.

And although I do not have the disabling symptoms that many people on this board have, my ears do bug me all the time. The fluid and pressure in them is nearly constant and has definitely taken away from my quality of life. Then again, if I knew this was a harmless condition I would just live with it without too much concern I guess. It is really the mental worry over meningitis that is more debilitating that any physical discomfort.

So, have you ever had meningitis? Other than keeping your house clean, what everyday precautions do you take to help minimize the risk of infection? Have you had/do you get meningitis vaccinations? And finally, if you don't mind me asking, what source of information prompts you to say that meningitis is not that common with cranial leaks?

Hope to hear back from you.

Thanks....Ed.:)

[Jaded1xx]

So, what did they do for you when you went to Mayo? I am thinking about going there myself but don't want to waste my time.

Mayo was a waste of time... the docs I saw did NOTHING - not so much as a test. BUT, I hear Dr. Mokri is wonderful and very well versed in leaks. So, if the docs at Northwestern don't come through I may try to get in to see him.

And do you have pretty much conclusive proof that you have a leak? (Or are you like me that you know you have one but cannot prove it).

Well, there are differing medical opinions on this. I had a pledget study that was positive for a leak in my sinus. But, some docs say that the numbers are too low to be definitive. Which makes sense if my leak is small and intermittent. I think the docs understand gaping wounds but not the small leaks. I also just had an MRI of my cervical spine that shows "low lying cerebellar tonsils" which from what I understand is slight brain sag. Still waiting to hear from the doc on that. I had sinus surgery in 05, and I've been in agony ever since. CSF leak is a known complication of sinus surgery, AND I also have Ehler's Danlos - a connective tissue disorder. I KNOW I have a leak - it's the only diagnosis that makes any sense whatsoever. It just seems that docs don't have any experience with this type of slow, intermittent leak and it's so frustrating!!! I have horrible headaches EVERY day, hearing weird noises in my head, tinnitus, dizziness, nausea, vision problems, you name it. I had NONE of this prior to surgery... Anyway, hope some of this helps!

[Edward]

Thanks for the info. Christy,

I agree with you. The combination of your symptoms, your surgery and your connective tissue disorder certainly would point to a CSF leak. I hope you don't think I was doubting you. I was just wondering officially if you had a diagnosis. I know without a doubt that I have a leak also but yet I am undiagnosed officially.

What causes the neurologic symptoms and the headaches with your leak then? Is it the low CSF pressure?

And how interesting that you have a connective tissue disease. There are three of us (that I know of) here on this board who have some type of autoimmune/CTD - you, Ginger and me. Although my CSF leak was caused by trauma (sports injury) I am truly wondering if it is my autoimmune that is keeping it from healing properly. And that may be your case also.

Just like my CSF leak, my autoimmune is undiagnosed despite years of "looking for it." I suffer from: raynaud's, heart irregularities, poor circulation, low blood counts, swallowing problems, etc. etc. etc. I actually was diagnosed with scleroderma at one point in time but then later had that diagnosis "taken away." Some of these autoimmunes are very difficult to diagnose. Until this stupid leak, my autoimmune was my biggest concern. Now, like you and Ginger, I have two problems to keep track of.

Good talking to you...Ed.

[Jaded1xx]

No, I know you're not doubting me - I'm just so used to the doctors doing it! And yes, the symptoms come from low CSF pressure. I think that I get more leakage down the throat than anything, but I've had maybe 3 gushers! I know - ewww!:p The docs have agreed to do another fluorescein test to look for the leak, and if they don't see it they're going to just patch my left sinus anyway. Just waiting for my stupid doc to get back into the country... it always seems like something, eh? :rolleyes:

Christy

[Fillough]

Dear Jaded,

I had a spontaneous CSF leak in the sinus vault for 18 months. It took a visit to ER before a doctor prescribed me a Duragesic(Fentanyl) Patch. It has 4 strengths; 25, 50, 75 and 100 mcg. My primary prescribed it until I had myrepair. Though it didn't completely knock down the pain, it was extremely helpful. I had surgery to repair the leak in August of 2005. It was done through USC. The ENT was excellent and it saved my life. I do still have headaches. But it is manageable. I was working three weeks after the surgery. My doctors were very concerned that during the long wait for the surgery I would catch meningitis. I was on Keflex for over a year. So after the surgery I was very susceptible to cilius. I began having very high fevers and stomach flu syptoms. Taking acidophilus regularly corrected it within a day and abatedthe symptoms. I know the level of pain you are or were going through. It was 24/7 and level 9-10. Please feel free to contact me if my experience in the matter can help. There is hope.

Phil

[Jaded1xx]

Hi Phil! Thanks for responding....

My doctor has also finally prescribed the Duragesic patch and it really does help. Unfortunately, I still have to take Norco everyday but only about 3 when before it was 8+. I can only tolerate the 25mg as anything stronger knocks me out.

I do have some questions for you if you don't mind...

Where in the sinus is your leak? Were your headaches only positional? Did you have tinnitus and weird noises that seemed to come from inside your head? How were you finally diagnosed?

The docs I come across seem to know little about a small intermittent leak in the sinus. Any info you could give me would be greatly appreciated! My leak is due to sinus surgery, and is still not officially diagnosed - even with a positive pledget study. If you did have a pledget test, can you tell me what the counts where? Sorry all the questions - it's just difficult to find someone with a cranial leak like mine! :o

Thanks!
Christy

[barngoddess]

Hi Christy--
Sorry to hear you're going through all of this CSF leak stuff--been there myself from ear surgery I had many years ago. I was finally diagnosed with a CSF leak in 2002 and had a craniotomy done due to my brain hemmorhaging too.

I also have Meniere's Disease, so the sounds in my head I was pretty much used to already and the dizziness too--I went to physical therapy with a great PT who taught me several exercises I could do on my own in bed to help the dizziness and they also seemed to help the sounds and tones reduce a lot too.

My leak would come out of my nose at first--the headaches were horrible and the only way I could reduce the pressure was to press on my ear (left) and then it would release the pressure and fluid would come out my nostril (oh so pleasant huh--yeah, a real hit at parties I could have been haha). Anyhow, eventually, the fluid started coming out my left ear, eye and throat and then I finally had surgery and got repaired.

I STILL have horrible headaches, but no leak. I have been unable to work and I have a small child too, so thats been a bit tough--I'm on disability now (well, I have been since I was diagnosed) and I can't go a day without having to lie down. I have tried every drug imaginable to mankind and am currently
thinking of trying an "Occipital nerve stimulator" and have it surgically placed in my head and/or neck area to try and help with the pain.

When I first was diagnosed, I was a member on this site then (2002) and I got TONS of great info from people on this site. I was able to tell the doctors what I wanted to be used in my body instead of allowing them to choose for me. ie: a specific type of glue, my own fat instead of some from a corpse, the type of cut I wanted them to try on my head etc. And you know what? They did everything just like I asked and it turned out great and I didn't even have to have my head shaved--they braided pieces of my hair in different places and shaved around it all--

There is SO much information out there when you get diagnosed and they have a plan set for you. Ask for help with any information you get and people will send you links to check out and read up on and it's just great, really.

I'm here to give you my support too and you are very welcome to send me private emails if you ever need a friend to just talk to sometime. DOn't worry about all the questions--we're all for the same things, and that's answers, so just ask away!!!!

You'll be in my prayers Christy--and when the weird noises get too loud for you, try to focus on another sound and it helps. Just focus your mind on one of the sounds and try and block the others out. Take care!!!

[Edward]

Hello Tami,

I like your nickname "BarnGoddess" - very clever! I am "Ed" and I have not been diagnosed with a CSF leak but I am sure I have one. I found your story interesting and I have some questions for you if you don't mind.

I sustained a skull base fracture about five months ago and since have had problems with fluid in my ears. I believe it is a small amount of fluid but it is very annoying and uncomfortable. My ears commonly feel full and stuffy and often the fluid slowly will ooze or drip through the ears. If things are flowing a little harder then I have noticeable dripping down my throat and once in a while I have a drip of two come out of my nose. I am going to see a specialist fairly soon and have a cisternogram also so I am hoping that will shed some light on my problems.

But I am most interested in your story because your ears were affected by the leak. There are only a few of us here with ear-related CSF leaks so I have a few questions for you. First off, how long did you have your leak before it was diagnosed? And then how long was it from your diagnosis to when it was fixed? Did you ever get meningitis? Did any of your doctors ever mention how big a risk meningitis was for you? So, is your leak totally gone now then - at least as best that you can tell? And how bad is it to actually have to go through a craniotomy? (I am scared to death at the thought of having any operation - much less having my head opened up.:eek: ).

I hope you don't mind all my questions and I hope to hear back from you.

Have a great day....Ed.
:)

[barngoddess]

Hello Ed--thanks for liking my name--I live on a ranch, and I've always said I'm the prettiest thing we have out here--hence the name, barngoddess--lol

I had my ear surgery approx. 1996 and I went back to the doctor numerous times about always having a runny nose. He said it was just sinus, take this and you'll be fine. I got sick with "sinus" or "allergy" problems a LOT for several years. The doctor that did the ear surgery retired so I saw ENT doctors mainly after that.

It was only by a flook that I was diagnosed at all. I took my nephew to a consultation to have his tonsils removed and I just asked the doctor why I could press on my ear and have fluid come out my nose--all the time, thinking this fluid, was basically, snot/mucus--I had NO idea it was brain fluid. It is clear and looks like water pretty much, had a salty taste to it.
That was in 2002. So I went from 96 until 02 with this leak, it just kept getting worse and eventually hemmorhaged my brain through the hole.

I was diagnosed in February and the surgery was done in July. Yes, the doctors made a HUGE deal about meningitis, but you know what...I had gone all those years so far without catching something like that, I couldn't imagine why they were so scared for me now. I imagine the possibility was greater since I had the leak coming from my nose--what comes out can go in and you use your nose to breath in and out so germs are more likely to travel upward like that with a breath. I never got meningitis though.

Thay did make it into a huge deal though and I practically stayed home and away from ALL people and outside and I was scared half to death. I spent a LOT of time on the computer looking for information and other people who had gone through this. I never found anyone who had gone through a CSF leak like me, but made many friends with great info for me who had or still have spontaneous CSF leaks through their spines.

The craniotomy was fine. I have a few pics of the staples in my head --if you know how to email me personally (I don't know how to do much on here yet) then I will email them to you. The surgery was long, but it was fine--I was out of ICU in 4 days and then went into a regular room. I had no troubles with any facial muscles or nerves; I was able to walk and remember things fairly well--just tired a lot and with rest and all after getting out of the hospital, I was fine.

I have had troubles with the headaches since the surgery and I do have problems with speech at times, where I can't remember a simple word or phrase, and I get frustrated. I can't seem to absorb information like I once could, but it could be from the part of the brain they removed that was hemmorhaged. The surgery itself was a breeze--I was tired and my head was sore, but it didn't hurt like one might think it would.

I don't mind your questions at all. SO ask me whatever you want to Ed. My leak is gone now and I am happy I have no fluids running rampant out any orifices I have--haha

[Jaded1xx]

Tami, you sound like a total sweetheart! Thanks so much for you caring words...

So, you didn't have headaches while you were leaking, but you do know that the leak is fixed? Do you have any idea why? I too will leak out of my right eye - another new symptom that started after sinus surgery. I've been told that it's not possible for csf to leak from the eye - BS, right??? I'm now waiting to hear from Dr. Mokri at Mayo to see if he is willing to take my case. He really is my last hope as all the docs in Chicago do not seem to have a CLUE! I'm just so frustrated and tired of being in pain. It would really help if someone would take the plunge and actually diagnose me. There is more than enough evidence, but the docs don't know enough about my kind of leak so they just send me on my way. To make matters worse, my husband and I are seperating and I have an 8 year old son. I'm still trying to figure out how I'm going to deal with all this on top of the pain. I'm in Illinois completely alone (my family is in Oregon) and sometimes I honestly think I'm going to just lose it!! Ack, sorry for the detour there...:o

Again, you will definitely be hearing from me. I really appreciate the fact that you care - TRUST me!!! :)

Christy

[Edward]

Hi Tami and Christy,

Christy: I'm sorry. I sort of jumped into your thread here. :o I was so excited to read Tami's story that I just had to talk to her. I hope I did not step on any toes. Also, you are correct on the eye symptoms because I have run across references in medical information regarding CSF leaking from the eyes. I think it is called CSF occulorhea (spelling may not be quite right). Also, sorry to hear about you and your husband. I know it is not a big help but please know that you have folks here who care about you and are thinking about you.

Tami: Thanks for providing more details about your story. I am so fearful of meningitis with this so it is encouraging to me to read a story such as yours where you had a leak for years with no problem of infection. Yeah, I also find myself trying to avoid crowds and germs. Of course, Murhphy's Law here - but just a few weeks into my leak I got a rip roaring sinus infection. I figured I was "toast" at that point and imagined all these little germs just pouring into my brain. Fortunately though, I got over the sinus infection with no meningitis (knock on wood). It is also encouraging to know that your problem was actually fixed through surgery. I really appreciate you taking the time to "come back" to this website and talk to some of us. I imagine there are many folks who have leaks that come here and get fixed and then just leave the message board for good. Of course, I don't blame them for this but nevertheless it is nice to be able to talk to someone who has actually gotten better.

Have a great weekend.

-Ed.

[barngoddess]

Hi Christy and Ed--
I am fixing to run out for a few errands, but will be back online this afternoon and will write more.

Christy, I DID have headaches during those years and the terrible ongoing nose running but was always given antibiotics and sinus meds/allergy meds and sent on my way--no one diagnosed my real problem until years later. I STILL suffer with these headaches and am trying things all the time--I still see neuro's, pain mgmt. dr's, my primary physician --etc. I think I've tried everything except accupuncture at this point--but I do have a tens machine too--it does help sometimes too--but only temporarily. My headaches are ALWAYS in the same place--down the left side of my head and into my neck/shoulder--there are days I am in bed for hours, days and sadly even weeks. I've learned to deal with the pain different in some ways due to also having a 5 year old daughter. Her entire life she has spent watching me suffer. It was just a few months after giving birth (which was hell of its own due to having an unidentified CSF leak, thank you very much) I was diagnosed and had surgery. SHe was had to spend her life with her mom being "sick" and having headaches. It broke my heart the day I overheard her talking to a friend and sahe said, "I don't think I can play today, my Momma is in bed again with a headache and she might need me. My Momma gets sick a whole lot."

That was when I knew I had to mentally try and take a different approach to these headaches and get my life back--I pray a lot, that's for sure!!!:D

Ed--I am sure there have been cases of people getting meningitis, and in theory it sounds very possible and very scary. It very well could have happened to me, but it did not and it very well could happen to you too, so that is why taking ANY precautions you can would be the wisest thing to do until you are repaired. That way you're not risking what you can't afford to lose (which is my motto in life btw). I have gone to MANY doctors and some know about CSF leaks, and some have only heard but never dealt with any, so I find it important to make sure before you see any new doctor to ask if they have ANY experience with CSF leaks at all before you waste your time and money. Ed, I know the fright you're going through with the meningitis scare. It's human nature for a sane person to not want to die, so it is very frightening. I will see if I have any of my links from before left on my computer files and let oyu guys know afterwhile--sorry I have to run for right now. I'll be back afterwhile--if you will go to my personal email which should be available on this site, send me your phone number and I will call you and we can talk too and I am more than happy to answer any and all I possibly can. I offer this since my long distance is free--lol :D

Talk to you later--and Christy--you WILL get through this and so will your child. God doesn't put more on us than we can take, and believe me, we become stronger in many ways when we have to go such trauma like this. CHildren are pure at heart, and they are stronger than we ever give them credit for. I'm here for you, and sounds liek Ed is too, so just hang in there girlfriend--it will all work out!!!!

[barngoddess]

Hey Christy and Ed--
Sorry I didn't get back to you yesterday--I checked in but didn't see anything so I just went to bed--I had a headache yesterday (today too, but not as bad).

The first thing I wanted to say was that I guess since I had my leak 5 years ago (diagnosed) and I had dealt with my headaches for 20 years prior to that too, I may have made it seem that I didn't suffer from them, but I did and I still do.
I have learned to deal with them in different ways though, or else I would have had those nice young men in their clean white coats take me away by now--haha

I talk about mine in a more of an every day issue sometimes to most people who can't understand it, so I come across as if it were just nothing big--but it is. It has at times enveloped my life. I have seen doctor after doctor and taken drug after drug and then some--I have been on 15-20 precriptions at one time just to try and live and it hasn't worked. I am trying to get into another study currently for an occipital nerve stimulator--my newest neuroligist says I have occiptal nerve damage and thikns that is why I still have these headaches--they go into my neck and shoulder and back and just kill me--

I have a headache of some caliber every single day and have tried dealing with these for almost half my life now.

I am 41 now (but just barely, my b-day was last week) and when I was just barely 19, I had a closed head injury. Fractured my skull, was in a coma for a week or so, temporarily paralyzed on my left side and right eye drooped, lost my taste and smell (which about 9 years later came back some--not totally) and went through a whole lot of headaches then. So, in saying all that, it may be that part of my problem could possibly stem from that head injury, but no doctor has said "yes, it did" they only say, "probably has something to do with it".

I was told by one resident doctor that when I had ear surgery (1996) for my Meniere's Disease, that the surgeon drilled too close to a bone and that is what started my CSF leak, but once he told us that, we (my husband and I) never saw that resident again and no one else would discuss it with us ever again. Go figure--they protect one another I suppose in case of lawsuits--I would never in my wildest dreams sued anyone...things happen and I just want to be normal again!! I still want that now.

I have thought about going to the Mayo clinic too, but I have never looked into that for fear of financial ruins--haha Life's hard enough as it is.

SO whatever questions you have I will happily answer for oyu with my own experiences. I am still hunting for some links--I'll try to have those on here by tonight--Sunday at the latest. Hope every one is doing alright.

Always, T

[Edward]

Hello Tami,

It is interesting that you had a skull fracture years ago. It makes one wonder if that could somehow be related to your ultimate leakage also. My injuries were closed head injuries also. Really though, other than a couple small brain hemmorhages which were self-limiting, I did not have any real complications from my fractures - other than this darn leak. Wish I would just heal. But I am nearing five months out from my injuries now and losing hope that I am going to heal.:(

Have a great day.

-Ed.

[Edward]

Tami,

I've got your e-mail address. I appreciate your offer to talk directly, however, I pretty much just stick to the message board. I get more out of the message board because more people end up joining in which means more information all around.

Take care....Ed.

[Edward]

Hi Tami,

I failed to answer your question. I have not actually been diagnosed with a leak at this point. I am scheduled to have a cisternogram done in the coming weeks that will hopefully show it. My local neurosurgeon, however, has said with a small leak that is not causing symptoms the risks of surgery outweigh the risks of the leak. I am a little unsure of that philosophy, however, as I have not seen that anywhere in print. What I have found is that even small leaks can result in meningitis.

I'm sorry to hear of your headaches. Hope you are feeling better soon.

-Ed.

[barngoddess]

HI Ed--
I agree with even small leaks can result in meningitis too. I know I have read that numerous times and again all the doctors I saw were very concerned about me getting it--and extremely surprised I had not so far due to having the leak for so many years. But again, I took all precautions necessary once I was told about it and did not contract it.

I totally understand not wanting to talk but on board, I was the same way at first but then found others who I became great friends with and still am. I think my name on the board used to be keepinthefaith. And that's basically what I did and still do with these headaches. I wish I could say it ends someday, but for me it hasn't. I only know that I am no longer leaking out my nose, ear or eye now and I am happy with that, just fighting the headaches now.

I'll have time tonight to get online so I will check out some links and see if I can't find something that helped me before with info and questions to ask the doctors--that was the greatest part of my journey; learning about it and knowing what to ask and understand the answers.

Keep your chin up Ed--you're in my thoughts and prayers.