Life post-surgery ... two decades later

[carivan]

Hi.  I'm new to the forum and was wondering:  has anyone had problems surface YEARS after decompression surgery?  Haven't seen my NS for eons because he said I was fully stable and home-free.  Haven't even thought about it until started having more severe than usual neck pain after spending weeks at the computer doing my taxes.  If it's possible that the Chiari Malformation is destablilizing somehow, then I'll need some pointers on finding a Chiari expert in the  Kaiser network.  Kaiser's a bit tricky finding a good expert in rare conditions. :)

Anyway, I'd sure like to hear other people's post-surgery perspectives.  Thanks.

[itsy1]

Hi!  Welcome to the forum :)

I had about 19 years between my two decompressions.  I had a decompression and a shunt placed when I was 19.  Then I became a "invincible" 20 year old and I too lost track of my NS.  As far as I was concerned I was fixed; now I could go about my business.

Well, life and kids seemed to slowly edge my symptoms back.  It took till I was 35 and had a car accident before I decided that maybe I should go see a neurologist about my many progressing symptoms.  Through a series of doctor's missteps I had a neuro-otologist finally show me my rehearniated cerebrial tonsils and direct me to the Chiari Institute.  After seeing the doctor's there they determined that a lot of stuff that I just thought was growing older was CMI related and recommended surgery.  They also diagnosed me with EDS (I thought I was just bendy) and occult tetherd cord syndrome, which I also had surgery for.  So in June, '08 I had a decompression and in August, '08 I had a cord detethering.

When it was all said and done both Dr. Mihlorat and Dr. Bolognese suspected my cerebrial tonsills had reherneated due to EDS and because I had a extremely tethered cord (even though it was occult and you couldn't see it on a MRI).

Now I'm doing pretty well.  I'm used to my new post op "normal" and am dealng with some neruo stuff that's just going to be permanent.  The thing I wanted to say was:  I'm back to living a full life.  My symptoms snuck up on me, and yes, it was scary to think of another surgery - even going back to the neuro - But I'm so glad I did.

I hope you're able to find relief too.

[selmaS]

  Hi and welcome to the chiari forum.

It is possible to develop scar tissue or related conditions post op....most of the time u may be expecting it if u know pre op what other related issues u have...like tethered cord, Ehlers-danlos*....Some like PTC can develop for no reason post op....

Those with EDS* can have an issue with cerviocranial instability...and with time and certain activities can affect HA's and neck pain.

We do have other members from CA and in the Kaiser network...if memory serves me (many times it doesn't, so look at Dr List) there is a Dr Won in CA in Kaiser for chiari.....As I mentioned do look at our list of Drs in CA and research them.....not all may be true chiari specialists ot in ur ins network.,...