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Old 11-09-2010, 12:51 AM
The_Leaker The_Leaker is offline
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Default New cranial leaker: stressed and depressed

Hey folks, I'm new to the forum.

In August, I had a case of mastoiditis (I'm a 26 year old male). I dealt with that for a few weeks and during a hospital stay I noticed fluid dripping from my nose to which the doctors and nurses thought nothing of. After I got out of the hospital, my dripping continued and I dealt with it as I would with a runny nose. It continued for weeks at a time and it took several trips to different doctors (including several ENTs) to find out what exactly is going on. I lost alot of sleep due to the fluid dripping down the back of my throat (constant coughing and choking) and had alot of pressure and headaches. Additionally, I can't really hear out of my left ear since it's being filled with fluid.

After weeks of getting the run around, I found out that I have a cranial CSF leak. I was scheduled to have surgery on my mastoid to repair the leak..... then I was fired. All my doctor visits and days off sick caused my employer to fire me since I was missing too much time from work and dealing with the leak effecting my work negatively (I work in IT and at the time I was working at a hospital..... ironic). I had to postpone the surgery to wait for COBRA to kick in.

So right now I'm fighting to get unemployment (got fired 2 weeks ago and still not sure if I'm going to get it), I'm going through the torment of a job search (and having to eventually drop the bomb that I have to take time off for surgery soon after I start), I'm having financial problems (hello medical bills), I'm worried that not having an income will affect the relationship with my girlfriend who lives with me (she's been very supportive and loving, but the fear is always there), and I have to worry about fighting off meningitis while dealing with the other awful things going on with my CSF leak (and worrying about what postponing surgery may do).

Needless to say that I'm stressed out and very depressed. I'm hiding it from everyone I know, but deep down I'm on the verge of having an anxiety attack. The source of all this is my CSF leak. All the fear from surgery (they're going to make an incision under my ear to do a skin graph on the effected area and not going through the nose) is still there as well. I don't know what to do and I'm very scared, I need some kind words.
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Old 11-09-2010, 02:46 AM
bstone bstone is offline
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I understand where you are coming from. I am 30 and am a spinal leaker. I developed my leaks when I was 26 and it took until I was almost 28 until I got diagnosed. Spent over a year in hell.

The good news is your surgery will likely cure you. The bad news is you have to pay through the nose for COBRA. Chin up and know that you'll probably be just fine!
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Spontaneous spinal leaker. 54 blood patches, 2 fibrin glue injections, 5 LPs, 5 CT Myelos and 10 MRIs.

Primary author of Spontaneous Cerebrospinal Fluid Leak Syndrome on Wikipedia.
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  #3  
Old 11-09-2010, 03:35 AM
dagaz dagaz is offline
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Sorry about your job situation... talk about kick you while your down. I have been dealing with a csf leak ( cranial) for 17 years and 16 brain surgeries to try and repair it. No such luck. I deal with the pain with hydromorph contin and laying flat most of the day. I pray one day it just heals. The only problem with waiting to (try) and correct it is the raised risk of meningitis but since you have already had your hands full with this and know that you have to be extra clean to ward off other bouts of it there isn't much you can do to help your situation except, lay flat on your tummy head to side, NO lifting,NO straining ( bath room duties ), NO bending to tie shoes etc you may have to do this for months.... if you handle your leak as though it's an extreemly fragile item you may give it a chance of it healing on it's own which is WAY better than brain surgery.
I hope that you are one of the lucky ones that can heal on it's own..don't try and (see) if the leak is still there on days when the leak is quiet. In other words don't put pressure on your head to try and force the leak... I know weird but some do this just to "check" when they are having a better day.

Good luck... Connie
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Brain/Pit tumor=16 brain surgeries=18 year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, bifrontal tension pneumatocele ( air under the skull next to the brain)... Dag "If I started crying I wouldn't stop!
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Old 11-09-2010, 07:55 AM
Robbysmom5 Robbysmom5 is offline
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Hi Leaker,
Sorry about your leak and your job. I work in IT too and understand. I hope your insurance situation gets resolved quickly so you can address your leak. You can also get a meningitis vaccine for the most serious bacteria that cause meningitis ... maybe you can do this while you wait.
Good luck!
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Mother of teen w/ lumbar Scheuerman's, L5 spondylolisthesis, repaired 8-month CSF Leak, L3-S1Fusion (2009)
Robby's Leak Story
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Old 11-09-2010, 09:08 AM
The_Leaker The_Leaker is offline
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Thanks for the kind words everyone, I greatly appreciate it.

I got the bacterial meningitis vaccine in 2003 when I started to live in the dorms at college, is this a vaccine that needs booster shots?

Also, I've been taking it easy lately and it seems that I can finally get some sleep. I don't know if the leak is healing slowly or scar tissue is forming, but the amount of fluid that drips down the back of my throat is manageable now so I'm not choking like I was.

At first I was draining the fluid because I thought it was just buildup in the middle ear, but now that I know it's CSF I've been holding onto it. That seems to be helping my situation, but the fluid has pretty much made a reservoir in my left ear and I can't hear much of anything (makes the interviewing process quite challenging). I'm trying to deal with the depression issue in stride too, I'm usually a really positive guy but this situation is a bit overwhelming.

Once again, thank you for the support, and Connie I hope everything will turn out OK for you!
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Old 11-09-2010, 01:29 PM
skycatzmom skycatzmom is offline
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Hello The Leaker

Glad you posted, sorry things are so messy for you right now.

The work thing is insane. I, too, watched it all tumble and slide. Good move to position for COBRA, keep your sights on using that to get yourself through this situation.

I am hopeful that you will get some good help, fine medical care and the chance to heal well.

There are some kind, smart and resourceful people on this board. You are not alone. You are doing just fine.

Wishing you a good day and a bit of peaceful rest.

Sky
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Spontaneous spinal. "Crummy dura". Cysts. 3 BPs, 1 glue, 2 surgeries, 4 LPs, 4 CTs & 7 MRIs. Still leaking.

Call me Delta Airlines, because I can't handle all your extra baggage. - Ned Flanders
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Old 11-10-2010, 05:42 AM
dagaz dagaz is offline
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I'm glad you found this place, there is a wealth of information here and some of these people know the best surgeons in the country. I'm in Canada and have been bouncing from one Neuro Surgeon to the next.
If the leak seems to have less coming down the back of your throat things could have started to heal. Your doing something right. I know that it gets depressing when everyone thinks you look "OK" but they don't know what's going on in the inside. I have Multiple Sclerosis as well and this is a common misconception that people with MS are lazy. It's a proven fact that most of us were total Joc's at one time.

How is your pain? I know once you sit up or stand up it's right back to where it started that's why I lay as flat as possible most of the day.

I hope to God your leak heals and you don't have to waste years trying to fix it or get it to heal. I feel like I have missed so much.

Good luck and keep in touch....
Connie
__________________
Brain/Pit tumor=16 brain surgeries=18 year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, bifrontal tension pneumatocele ( air under the skull next to the brain)... Dag "If I started crying I wouldn't stop!
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Old 11-10-2010, 12:54 PM
The_Leaker The_Leaker is offline
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The pain is pretty minor thank goodness. My intercranial pressure stays pretty constant and I haven't had as many headaches since I haven't been in front of a computer screen all day. It's got a lot of better than months previous where I was getting 3 hours of sleep a night which was effecting every part of my life. Right now you probably wouldn't be able to tell anything is wrong until I start to lean over.

I actually was able to get my surgery rescheduled to tomorrow. While I really won't have the time to prepare myself mentally (this is my first major surgery ever) I just want to get it over with so that I can heal. Part of me is relieved that this nightmare could possibly be over, but then again I am shaking from just the thought of the whole thing.

I should be in good hands though, the doctor was recommended by several ENT's and he actually saved my grandfather's life over a decade ago. They said the procedure will take 2 hours and they'll have me out the next day which doesn't sound that bad. They also said they would only be touching the mastoid bone to fix the leak which is good news.

Also, this forum is a great source of information and I thank everyone for their kind words!
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  #9  
Old 11-10-2010, 04:10 PM
skycatzmom skycatzmom is offline
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Dear The Leaker

You are sounding good! Take that inner strength into the OR with you. Will be thinking of you and looking forward to hearing an update.

Plenty of folks here are with you. Take care and be sure to report back.

We'll wait right here.

Kindly,
Sky
__________________
Spontaneous spinal. "Crummy dura". Cysts. 3 BPs, 1 glue, 2 surgeries, 4 LPs, 4 CTs & 7 MRIs. Still leaking.

Call me Delta Airlines, because I can't handle all your extra baggage. - Ned Flanders
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  #10  
Old 11-10-2010, 07:58 PM
dagaz dagaz is offline
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We will be waiting a praying for you.... NO leaning over the pain when you do is telling you don't. My last Craniotomy was 15 hours long, I know the fear, stay positive and I will wait to hear the good news which won't be right away...

Good luck...
Connie
__________________
Brain/Pit tumor=16 brain surgeries=18 year csf leak(Feb, 1993) After initial tumor removal!, SPMS , Hydrocephalus from a intraventricular hemorrhage! Panhypopituitary, Diabetes Insipidus, bifrontal tension pneumatocele ( air under the skull next to the brain)... Dag "If I started crying I wouldn't stop!
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