Hi..It has been a long time...

[Guest guest]

A few years ago I spent MUCH time here and recieved MUCH help from

members as well. It has been a long struggle and a very long time but

I am back now.

I had my first Chiari decompression in Oct. of 05. I developed a

pseudomeningocele, chemical meningitis, pseudotumor cerebri, and a

whole lot of other complications. Severe weight loss which put me in

a position of having to have a feeding tube over this past

summer..but previously in March/'06 a revision/decompression, LPs

every 2 months after that 2nd decompression and then finally in

Dec/'06 an LP shunt. I realize for many the VP shunt is the best but

in a case of EDS we considered the dangers of a Vp because my

ventricles were not to healthy anyway we decided there was less risk

FOR ME to use a COdmin-Hakim Reprogrammable LP shunt valve. Even

though my healing time was soo very very long and literally created

many post surgical complications I am finally doing well now.

The things I am most concerned about at this time is the EXTENSIVE

LOWER BACK PAIN I HAVE DAILY! I am a bit concerned this could be due

to the placement of the shunt tubing in the lower part of my

spine..additionally I had to go to the hospital a few weeks ago with

horrifying pain in my chest..all on the left side where the shunt

valve and tubing runs up my side to the valve and then back down from

my side to my stomach. A CT SCAN SHOWED EXTENSIVE SCARRING!!! EDS???

Perhaps it is EDS that is causing this which is concerning me because

I dont know what else to do. If I have problems with the shunt and

more surgery wont I continue to have to have the shunt redone over a

period of several years?? I am not quite sure what to think about the

EXTENSIVE BACK PAIN NOW.

I never had this kind of pain and now also

appear to have some signs of tethered cord which I never had

previously. Where does tethered cord come from? Is this a condition

that may develop POST OPERATIVELY? OR is it a condition that we can

only have to begin with? There are so many conditions now being

associated as " FAMILY " that I am really confused about which came

first and what to do about any of this anymore.

I ALSO HAVE MAJOR DAMAGE FROM C-1 TO C-6 which is CLEARLY SHOWN ON X-

RAY CT AND MRIs .. FUsion has been recommended OVer and over again

but honestly..I am holding out hoping I can get the best bang for my

buck, in other words the procedure seems to be improving more and

more, i know i am pushing my luck and eventually will be putting my

spine and my self in danger if I dont do it. I have been told I am

stepping onto that line now but I am stubborn I guess..ARE ALL THESE

CONDITIONS REALLY ONE BIG UGLY FAMILY???

ANY INFORMATION AND ADVICE IS MORE THAN WELCOME..ALSO ANY PARTICULAR

KNOWLEDGE ABOUT ALL OF THESE CONDITIONS WOULD BE HELPFUL!

Thanks and I hope everyone is well today!

Amy