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


  1. Hi Michele. I've been living with my pseudomeningocele since my surgery, back in February 2013. It seems to resolve itself then act back up depending on my activity level. It was really bad the first 4 or 5 months after surgery, it looked like I had a golf ball in the back of my head. I didn't like any of the options my surgeon presented so I've just been living with it, and at the time you recommended avoiding the shunt. In November I'll be flying for the first time since the surgery so I'm keeping my fingers crossed that it doesn't act up and cause trouble. I guess I don't have any suggestions for you other than to listen to your body. Thanks for keeping up a great blog. Dave

  2. The only, I think harmless contribution I might make would be to suggest a reading of Grain Brain by the neurosurgeon Dr. Perlmutter wherein he excoriates the effects of modern grains of whatever type upon the brain and, of course, subsequently the entire body. He deals with an entire array of neurological conditions through his dietary recommendations that are based on the latest studies. Best, Paul Xylinides