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Hello everyone!!!

Just saying hi.  I have been through a lot over the last year and it just keeps getting more and more interesting.  I am a very positive person, prior to getting sick I lost weight and ran a 10K and 1/2 marathon.  I worked hard to be healthy, I have worked hard  to be where I am in my career as well by becoming a nurse and then growing to be a leader/nurse manager to over 200 employees and 3 different successful deparments.

 

In July my world rocked.  I had a runny nose for over two years and thought maybe it was alergies.  Eventually, my runny nose became so runny it made "puddles" so I saw an ear/nose/throat doctor.  Only to find out it was CSF, I then became ill with a resp infection and admitted to the hospital, flown to Seattle for surgery to fix the hole in my brain, diagnosed with Pseudo Tumor Cerebri, off work for a very long time, back and forth to doctors, sudden head and ear pain due to increased pressure.  Had LP punctures and found out my pressure was too high, and just last week had an LP shunt placed.  Now I feel ok, but have pain in my abdomen and spine.  I have a lot of questions and concerns.  I do not have a lot of headaches since...well I have had slight ones.  I also do not have a lot of ear pressure, until today and then a little bit.  I am tired, sore, confussed, and frustrated just to name a few things. 

 

I am wondering...does anyone have this?  Is there any advice?  What have you experienced with an LP shunt?  What do I have to look forward to?  And much more....any advice or help would be great.  How long will I hurt with this shunt?  When will my life be back, etc...

 

I have so many questions and have so much frustration built up...

 

Thank you for your time.

 

VNC32010....

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Greetings,

I know what you're going through. You think you're unlucky? My name's Rob and I'm the first male to be diagnosed with pseudo tumor cerebri. This was in 2002 just shy of my 20th birthday. This all happened right after I had back surgery from a work related injury which resulted in CSF fluid leaking from my incision, which got infected leading to spinal meningitis then coma.... blah blah blah, I could go on but I'm here to talk about your symptoms (well mine at least). Well I had never had lumbar punctures, but I did have a dozen cervicle punctures to rule out hydrocepheles. And I had a Ventricular Perentenial shunt placed in my skull. After 2 revisions, when they finally got it right, I did not have the throbbing headaches that felt like they were crushing the base of my skull. Yet I did have odd fluxuations of pressure which would shoot up and down my spine, and I'd have surges of pressure surround my brain, putting pressure on my optic nerves causing just a LITTLE bit of light distortion. This would happen for a period of several seconds or so then go away. They weren't so much painful as they were quite unsettling. These scared the hell outta me at first, and it continued to scare me for years. Even though I knew from my own experience that nothing happened during these "episodes" and it didn't affect my life too much. It would usually happen while I was moving, after having been stationary for a while, kind of like a dizzy spell. Aside from the fear, the only other affect was people seeing my face  and saying "are you okay?" because I suppose I never hid the concern. Well anyway, I hope this post has helped you, and feel free to respond with your experience with pseudo tumor, and if you have any questions or could use someone to identify with I'll be around....

Regards,

Rob W.


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One more thing, the only advice I can give is to hang in there, hopefully you will get used to having it soon. There will come a point where it seems like it has always been a part of you. Back in 02 the doctors told me the condition would run it's course in 5 years, that it is very rare that it becomes a lifelong condition.And it did, six years later, against the doctors recommendations I demanded that they remove the shunt. A LITTLE frontal lobe damage resulting in an already impulsive brain being slightly more impulsive but I love it! So yea, some minor aches and pains, some HOPEFULLY minor anxiety and life will eventually go back to normal and one of these days it will all be a distant memory. This is NOT a permanent condition like paralysis or erectile dysfunction hahaha! Just be glad you were born a woman! =o]

Also I read up on PTC for the first time in several years. WAYYYYYYYYYY different..... The last time I read it said approx 1 in 3,000,000 women and no statistics for men, only one source said "it's possible". Even the names are different. Times change.
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