Becky Crawford Becky CSF Leak

First post: Apr 11, 2017 Latest post: Oct 3, 2017
I'm starting a Caring Bridge page just to have one spot for updates.  Please, I don't want attention to be focused on me during this time.  I do understand and realize that I have a few caring family and friends and some include curious RN's who will want to know all the gory, nitty, gritty, medical details. I'm more than willing to share all that I know.  This page will be available to access at your convenience.

2/13: I started leaking clear thin liquid out of my left nare fairly inconsistently consistent. 

2/28: Was still happening so I went to St. Luke's Urgent Care they diagnosed me with Post Nasal Drainage (PND) sent me home with Claritin and Flonase and as I had my annual Dr. Appt with my primary care physician (PCP) on 3/14 follow-up then. 

3/14: Still dripping from my nose at my PCP appt. so she ordered labs, chest xray, ECG, MRI of the brain (3/21), and Pulmonary Function Test (PFT) (3/21). There was a abnormal area of my brain on the MRI (expanded sella with possible arachnoid cyst) so did a follow up with a CT of the sinuses (3/23) and sent some of the fluid dripping from my nose to the lab. 

3/28: The lab test came back positive as Cerebral Spinal Fluid (CSF) which means I have a leak in my brain. I put myself in reverse isolation - risk for bacterial meningitis.

3/30: F/U my PCP on Thursday 3/30 she wanted a few more labs (related to pituitary function) and we discussed next steps - Discuss case with Neurosurgeon.  Cerebral Spinal Leaks usually occur with trauma or accident but can also be spontaneous. Sometimes they heal themselves and sometimes they require a surgical patch. Haven't had too many symptoms other than headaches on and off but not too bad and the leaking from my nose which has been so annoying. .

3/31: Dr. Jutzy (Neurosurgeon) out of office out all next week so appointment scheduled for 4/10.

4/5: All labs negative for anything being wrong with my pituitary.

4/10: Appointment with Dr. Jutzy - I'm a strange case don't know why this is happening to me.  The cyst is non cancerous described in layman terms as a pimple filled with CSF, which is causing my sella area of brain to become enlarged.  Most likely then causing pressure enough on surrounding area that a leak has occurred.  Will be having brain surgery through my nasal passage which will from the outside look like I'm getting a nose job.  They (ENT surgeon and Dr. Jutzy) will go in and drain the cyst and patch the area with either muscle (from thigh), fat (from abdomen), or synthetic product (TBD).  The risk is still there to get bacterial meningitis but I've probably had this leak for 3-4 years and so haven't gotten it yet.  There is a 5% chance that surgery won't work and will have to be repeated.  Don't know all the recovery process yet more to come - will have to have plastic tubes up my nose (described as tampons) for about a week post surgery.  Won't be too painful but won't be able to breath through nose and will be annoying.

Next Step: Meet with surgery team the ENT and Dr. Jutzy to discuss options and any questions I may have.  When Dr. Jutzy asked me when I would like to have it done I told him ASAP.

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