CSF Leak with High Spinal Pressure

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

menigitis head
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted Today 2:53 PM (GMT -6)   
May 21st.. Hit with Bacterial Menigitis.  Took me out of commission for few months.  No ryme or reason for it that they could tell.  Only one other case is the US over the past 10 yrs for my kind of Bacterium.  Usually happens to premature infants in underdeveloped countries?.  Infectious diesease Dr. was scratching her brain on how I contracted it.  5 weeks out of the hospital the blurry vision started taking place.. hmm warrent a visit to the eye dr.  All check out with that one, then another opthomologist to check the veins.. all check out.  Then to a Nuro Opthomologist.. all check out with the Optic Nerve, vision tests.. ect.   Even had an echo cardiogram.. Nothing.. MRI's CT contrast.. ect. Nothing..  We had suspected a CSF leak,.. Off to the ENT for their assesment.  Pledings up the nose, rad. iodine. in the spine.. One image out of  188 showed a possible leak in the sphenoid sinus.  pledging came back positive for spinal fluid.  Great  finally after mos of test, they found a leak.  It can be plugged sooo OK, I can live with that. (don't exactly want the fat from my tummy injected into my nose and then glued all together, but I don't want Menigitis again either. 
 
ENT sends me to get a spinal pressure test.  Of course it comes back as High.. (28) with a leak..hmm ok now what.  Will see the nuro surgeon (whom has been reading all my imaging, so he's familiar at least with my case). this coming Friday.  I use to drain out of my nose for years.. was alway misdiagnoised for having allergies.  Since the menigitis the leaking has diminished, but I think it's now going down my throat instead.  Bottom line I may end up needing a shunt to keep the fluid levels down.  The headache I have every waking moment of the day is just there.. so use to it now that I feel like this is how I should feel.   I really dont' want a shunt in my brain, I really don't want the fat stuffed in my head.  Will someone please pinch me so I wake up?  Seriously I'm done...   Been reading good and bad about shunts.. ugh.. just needed to throw this message out there.. better here than in my head. 

menigitis head
New Member


Date Joined Sep 2010
Total Posts : 2
   Posted 9/22/2010 6:16 AM (GMT -6)   
I'd like to hear your good and bad experience's with a shunt. Also... I need access to one of those Haircutt sites that you can impose face to with different haircutts. lol I'm past my mohawk mosh pit days.. so one half of my head being shaved isnt going to do it for me :). In all seriousness.. the constant headache is insane to live with. Your stories are appreciated.

redhead41
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/26/2011 5:02 PM (GMT -6)   
I just had to reply to this. It sounds so much like what I have been going through. For the past 6 years I have been loosing my hearing and I have been to several different doctors who kept telling me I had allergies. Finally in Oct of 2010 back to the ENT to get hearing aid to help me hear. He decided to do a myringotomy instead and when clear fluid was rushing out he sent me for an MRI and CT Scan. My ears would not heal and he fluid kept draining for days. The CT scan showed holes in both sides of my skull in my temporal bone. Since I could not heal and the CSF was leaking out something had to be done quickly. I was sent to a nerosurgeon who knew something had to be done but wanted to weight the options and suggested a shunt to control the fluid and to open it up right after surgery to allow the fluid to go out the shunt and stop my ears from leaking. So in October 2010 a week later I had the shunt put in and it worked. Stopped the leaking from my ears. Now to get my hearing back we tried the shunt valve to control the fluid but this was not successful. the only way to get my hearing back was to repair the leaks. In March 2011 I had the right side repaired which was very successful. No complications and I had my right side hearing back. In May 2011 I underwent repair to my left side. The surgery went pretty well, I did have some minor nerve pinching which left me with some issues with he left side of my face but its July and it seems to be much better. now I only have a few things I wish were better. I have been having headaches throughout the day and especially when I bend forward. I also have a runny nose when I lean forward. I am not sure what is happening but I fear that I am now leaking again and that I may never be without pain in my head. The best advise I can give anyone is find a doctor you can trust and who cares about you and listens. I did and it is the only way I have been able to keep my sanity through all this. Good luck all.

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 7/26/2011 7:12 PM (GMT -6)   
So sorry to hear what you have been through. It's funny I am finding this post tonight because I'm going for a CT scan tomorrow to get pictures of my brain. I have chronic migraines and my doctor wants to check to see if there has been any change since my last Ct scan. He had mentioned that it could be too much fluid build up around my brain or could be more scar tissue. The only terrible symptoms I have is CHRONIC migraines and neck pain. Guess I will find out hopefully by the end of this week. I had brain surgery several years ago to remove scar tissue from the right side of my brain that was causing seizures. The surgery was a success, now to get these migraines under-control. Best of luck to you!

Mercyme

redhead41
New Member


Date Joined Jul 2011
Total Posts : 2
   Posted 7/27/2011 3:25 PM (GMT -6)   
Best of luck to you as well. I finally broke down and called my Doc today. I was supposed to have follow up appt in a week or so and I just cant stand it anymore, so I broke down and called his office today. He is going to see if he can squeeze me in tomorrow and I am hoping all I need is a simple shunt adjustment.

I am so lucky to have a wonderful Neurosurgeon.

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 7/27/2011 9:33 PM (GMT -6)   
I didn't get to go for my CT scan today...their machine broke down, so I am scheduled to have it July 29th. grr!!! My migraine was just mild to moderate today, nothing I couldn't handle. :)

Mercyme

mercyme
Regular Member


Date Joined Feb 2005
Total Posts : 310
   Posted 8/4/2011 8:14 PM (GMT -6)   
I got my CT scan results back and nothing had changed since my last CT scan a few years ago. I am thankful there was no changes. I am still having daily migraines and I really don't know where to go from here. I'm starting to think this is just the way it is and I'm going to have to learn to live with these migraines. I don't know if there are any other test that the doctor could do to check for anything else or not. I'm seeing a chiropractor next week, hopefully get a neck massage. I think of this website often and pray for each of you that you will find something to help you with your migraines.

Blessings,

Mercyme
New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, September 21, 2018 6:14 PM (GMT -6)
There are a total of 3,005,560 posts in 329,240 threads.
View Active Threads


Who's Online
This forum has 161782 registered members. Please welcome our newest member, Sozinha.
293 Guest(s), 8 Registered Member(s) are currently online.  Details
mattamx, Vdang2k, island time, compiler, Serenity Now, 142, jwebb, minnietoty