Sunday, September 28, 2014

Pseudomeningocele Anyone?

Okay, so here it is.
I have written and rewritten this post.. trying to sound upbeat and positive..
Which I really am, but everything I write comes across flat and empty.
Here are the facts...and nothing but the facts!

I find myself just over six months post op... again. Surgery #2.  I am doing quite well, working more than ever (since surgery #1), both as a nurse and on our personal business.  I'm taking a year long class that I absolutely LOVE and I have so much travel planned that my calendar is having a hard time keeping up!

I just a have a little neurological fine tuning that is getting to be rather troublesome...and I have to make a decision pretty soon about calling my doctor.  When I say doctor- I mean neurosurgeon- the only doctor I dread calling.  Not because I don't love him or trust what he says-- but basically, because I know that any call to him can result in another trip to the operating room... and really, who wants to deal with that?

So, I'm open to opinions, advice, etc... post comments, private message me.. what ever-- and yes, this time --IF I go for a follow up, I am considering another opinion.  I hate to do that because I have internal shunts.. and Dr. Kim placed those.. they seem to be working fine, so I don't want to mess with this is what's going on:

You may recall, a few months ago when I flew for the first time I had the area at the base of my skull sink in.. like abnormally sink in.   Like, I've been hit in the back of the head with a brick.  Yes, not attractive.  I called Dr. K then- his response: "This can be normal for the first 5-6 months"  Well, now I'm 6 months and 2 weeks post op.  Two weeks ago, while at a neurosurgery appointment with a friend, I was told by her neurosurgeon (when he examined my surgical site-at his own request) that this is happening because I have a pseudomeningocele there.  He also said if it doesn't resolve within the next few weeks I may want to get it checked out.   Sometimes these have to be surgically repaired.

 Per Wikipedia: 
pseudomeningocele (soo doh mi nihn guh seal)  is an abnormal collection of cerebrospinal fluid (CSF) that communicates with the CSF space around the brain or spinal cord. In contrast to a meningocele, in which the fluid is surrounded and confined by dura mater, in a pseudomeningocele, the fluid has no surrounding membrane but is contained in a cavity within the soft tissues.
Pseudomeningocele may result after brain surgeryspine surgery, or brachial plexus avulsion injury.
Treatment for pseudomeningocele is conservative or may involve neurosurgical repair.

So, now I am at the point of ... do I get it checked now or wait?   Every time I fly (both neurosurgeons insist there is no reason for me to stop flying) a short trip.. either a two or three day turn around  with brief flying times... I end up in bed sick for a few days.. and it has been up to ten days.   I have lots of visual issues still.. unless I take a large dose of anti-seizure medication and I still have hearing loss.  I have a very painful (but not red or swollen) area at the base of my skull, the part that sinks in and puffs out when flying and typically get a very tender spot on the top left of my head, very sore, whenever I'm fatigued or at all under the weather.

So I guess.. I am just throwing this out there for any comments or suggestions.  I'm not asking for a new doctor or a referral.  I will visit my NS and another one in Houston if/when the time comes.

I did not post this in an open thread in a FB group because honestly-- those things get out of control-- but I would appreciate your feedback, experiences, etc.   Thank you!
Bob and I at CCWAA  Houston, TX  Sept. 2014

Tuesday, September 9, 2014

You may notice, I had a newsletter sign up form here, and now it has been removed. You are welcomed to message me if you would like to be added to my email list.  I removed the sign up because my website is being restructured. I made the decision to put this newsletter on hold. I will still send out updates, but I do not want to be tied to a newsletter commitment with the new things that have really shaken me to my core over the past few weeks.  I am so excited and am totally filled with joy and optimism with what the year ahead holds.  So, please, if you want to be in on the updates and be sent newsletters when they are ready to start on a regular basis, please, please send an email to me at  Thanks so much!

Wednesday, September 3, 2014

Today I am reading a book that I am assigned to read, not a book I picked up to read just because..I am reading a book by Napoleon Hill called Think And Grow Rich . The writings are profound- about every other line I stop to jot down a note in my journal.   However, the last line, I decided to share with you, my loves. I believe we all know how this feels:

          "You have been disappointed, you have undergone defeat...., you have felt the great
           heart within you crushed until it bled. Take courage, for these experiences have 
           tempered the spiritual metal of which you are made--they are assets of incomparable
           value. Remember, too, that all who succeed in life get off to a bad start, and pass through
           many heartbreaking struggles before they "arrive." The turning point in the lives of those 
           who succeed usually comes at a moment of some crisis, through which they are introduced 
           to their "other selves." 

I know how if feels to feel disappointed, defeated, afraid and in crisis. If you read back through my blog, you will find a roller coaster of emotion, of ups, downs, moans, groans and even laughter... I hope you take away hope and encouragement.  I hope you find your turning point.

What Would You Do?

At some point in my journey with these crazy brain things, I stopped feeling beautiful.  Not just physically beautiful, but beautiful on the inside, beautiful in my heart, in my spirit....
Do you feel this way? Do you feel as if you have become unattractive or defective?
Sister of my soul, you are not!
If you could choose one thing to accomplish with your beautiful life...what would it be?  Please comment below, your comments encourage others.  As for me... I am out today, running errands and making my life just a little more beautiful!  Have an Amazing, Limitless day!